2023-10-16 00:00:00 - Joint Committee on Children, Families and Persons with Disabilities
2023-10-16 00:00:00 - Joint Committee on Children, Families and Persons with Disabilities
SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Hearing on miscellaneous items. I'm Jay Livingston, the house chair. I'm joined today by my co senate co139 chair, Senator Robert Kennedy of Worcester. We'll call the meeting to order. I'd like to thank , Co Chair Center County, my committee staff, Carl Richardson, for making this here accessible with Karp services to everyone who is here to testify, before the committee, we do not have an ASL interpreter for today's hearing, unfortunately. We apologize for any inconvenience. If you require ASL interpretation and are not able to testify today, you as we happen to be with171 you at any other time, when we can arrange for an175 appropriate interpreter. Our staff is around here and then to my left and to Center Kennedy's right. And can assist you with this or anything else. Today's hearing is hybrid, and bills will be called the order that was displayed on the hearing notice Please note that elected officials may be called out of order at the discretion of chair. If you sign up, to testify prior to this morning, I'll call your name of the order that was204 received for each respond from respective bill. If you signed up to testify this morning, or this afternoon, you'd be called after I've called everyone that214 previously testified. Time permitting. We will limit218 testimony to three minutes per person and six minutes per panel. For those in the room, there is a clock on the screen Notice
SPEAKER 3, that will count down your time. I'll let you know when time is up. And if you're testifying on multiple bills, We'll call you on the first bill in which you're providing testimony only. We ask that you combine your testimony on all bills when you're testifying. You have any questions or concerns or technical difficulties, legislative information246 services, is at the end?248 And,249 my staff are monitoring the Zoom and are located, throughout the hearing room for help. Lastly, I'd like to take a moment to introduce the house members who are here today, we have Representative Ramos. In online, we have, Representative Daugherty And then I'll turn it to Sally County if she had any opening remarks.
273 SPEAKER2273 -273 Thank273 you.
SPEAKER1 - Alright. And so the first bill oh, first, we're going to start with Representative Scanlon who's here to testify. He's286 online.
Sure. Good morning, Chair Livingstone in in Chair Kennedy. It's a pleasure to be here with you. Just give me one second. I'm having a technical difficulty, getting into my notes. Okay, I got
REP SCANLON - HB 216 - SB 67 - So thank you so much for the opportunity to testify in favor of this important legislation. H.216 S.67 an act allowing spouses serve as caregivers, which I filed with Rep Orrall and Senator Comerford. This bill would make one simple change to our laws to allow spouses to serve as paid caregivers for home based care services under MassHealth as is already allowed for almost every other type of338 family relation. Children and grandchildren, nieces, and nephews, aunts, and uncles, and even ex-spouses. This bill will address a number, of issues351 at play when it comes to the need for and provision. Of home based care services. Weightless and access to care, financial security for the individuals and families who need care, and their caregivers, and continuity of care.364 Right now, we are in a situation where there is a shortage of caregivers and a wait list for those who need services.
According to the Executive of Elder Affairs as of April this year. There are more than 5000 requests for care pending under MassHealth while waiting for an available home care attendant spouse's faced the impossible choice of letting their loved one go without care or make significant sacrifice financially to work less in order to provide that care themselves. In fact, according to the recent AARP report, about 61% of family caregivers are in the for us and experienced loss of income, risk to career advancement, and increased financial and retirement insecurity. But let's eliminate that choice faced by so many across the commonwealth and allow spouses to provide that care and be paid for doing so. We, of course, have already decided to pay for that care anyway when performed by a different person.
So let us let spouses fill that gap. And an added benefit of doing so will be the enormous benefit to continuity of care. The direct care force Care workforce is incredibly fragmented. Turnover rates for the Direct Care workforce are about 50% each year. Care agencies and workers based from industry and just stay flexible with ever changing needs and schedules of workers and clients This leads to frequent changes of the bill of the care gap will lead to more consistent provision and quality, maintaining care relationships for longer periods of time, Again, I want to thank the committee for your consideration of this less legislation and urge favorable treatment of an act allowing spouses to service as caregivers. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Does anyone have any questions? Thank you for your testimony. Next, also online we have Representative Kay Khan.
REP KHAN - HB 192 - Good afternoon. Everyone, Chair Livingstone, Chair Kennedy,495 and the distinguished members of the committee.497 Thank you very much for the opportunity to speak in support of one of my bills House 192 an act allowing certain minors to consent to shelter and supportive services. Which I filed with Senator Gomez this section. Currently, minors experiencing homelessness are prevented from accessing supportive services without the consent of a parent or522 guardian. This is particularly harmful for young people who have experienced abuse, neglect, or family conflict. House 192 allows an unaccompanied minors to consent to support of services without a parent or guardian. If those services are necessary for their well-being.
While unhoused541 youth in Massachusetts are543 working hard to meet their base needs only 23% report receiving all the help549 they need. This is really unacceptable. It is a responsibility of the state to remove existing barriers and ensure access to badly needed resources. I'm hopeful that by removing the barrier, parental consent, more young people will be able to access services that they need. There are over 3000, unhoused youth in the commonwealth. There isn't a single reason why these youth are experiencing homelessness. It is a widely intersectional issue, and race, gender, and life experiences often play a role. Black youth are more than four times as likely to experience homelessness.
And Latino youth are more than 2.5 times more likely to, experience homelessness compared to the overall youth population. 30% of youth experiencing homelessness identify as part of the LGBTQIA community and 35% have been involved in foster care, and 26% have involved in the criminal justice system. And 20% are parents themselves unhoused minors are some of the commonwealth's most vulnerable residents, and many are desperately in need of support. We must ensure that these minors access in support of services, including mental health resources, access to proper nutrition, educational assistance, these are critically important times in their lives.
And we must really do all that we can to support substantial difference in their future and make us a financial dis difference in their future. These young people deserve to feel safe and listened to and supported, and I've had the honor of working on this legislation with Massachusetts Appleseed, a nonprofit promoting equal rights and opportunities in the commonwealth. I know they'll be here to offer comments as well. And they will be offering some friendly amendments to house 192. And I661 just want you to know that I fully support those changes So thank you for your time and consideration, and please do not hesitate to contact me, should you have any questions? Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Does anyone have any questions? Thank you for your testimony.
SPEAKER4 - Thank you.
SPEAKER1 - Representative Kern.
REP KERANS - HB 188 - SB 108 - Thank you. Good morning. Thank you, Chair Livingstone. Roger Kennedy.694 My esteemed colleagues on this all important committee, in the legislature. Thank you very much for taking me out of turn today. I won't be long. I am here today, to testify on legislation, I filed. An Act establishing guardians as714 providers of medical care to716 support the rights of incapacitated individuals, which I have filed in the house and Senator Lovely has filed in the senate. This bill would pay guardians through MassHealth to provide care for incapacitated, individuals, a crucial step that should be taken in a state that prides itself on our of care and for caring for the very vulnerable. House 188, as you know.
There are individuals who are both incapable making their own healthcare decisions, and they are all alone. We call them the un-befriended, which is very sad term. But that is the fact. These are people who may not have763 friends or family or anyone to step in and to say that they will help them make their or make their medical decisions. Again, these are people who have no capacity to make decisions for themselves. And it can lead to adverse health consequences. It also leads to delayed discharges from hospitals because there is no one to sign a discharge form. House 188 will require the executive office of Hal and human services to establish rates of payments for social service programs.
To compensate qualified guardians to help these, incapacitated individuals. Expanding Guardian ship will create a better system of care for the underfunded population, which the globe estimates as 3000 individual in our state. By providing compensation for guardianship, more people will step up to help those in need and will in turn alleviate the stress on the judicial system. It would be much better to provide a modest amount of compensation to willing guardians than to continue with what, elder services law attorney and great contributor to the well-being of elders in our state, John Ford, legal services of the North Shore.
Calls this a voluntold model where the court assigns guardians to perform these duties with no compensation, no background, nothing. This is an innovative approach that can both benefit those in need and address overcrowding in our hospitals.876 A 2019 study found that participation in guardianship programs that includes care coordination resulted in a significant reduction in ER887 visits, psychiatric hospitalizations, delayed891 discharges, and even arrest893 I thank the committee for896 your consideration. I'm very honored to be working with the dignity alliance on this bill, and I appreciate the turn to be heard today. Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions?
SPEAKER6 - Thank you. So much.
SPEAKER1 - Also, I'd like to acknowledge some members that have been participating. We can be here for some time. The representative Moran who's here in person, and, vice chair Genino is online. Also, online is Senator coming from. You can test by next.
SEN Comerford - SB 67 - HB 216 - Thank you so much, Chair Living Stone, and of course Chair Kennedy esteemed members of this committee I'm honored to join you today to offer testimony in support of S.67 and act948 allowing spouses to serve as caregivers I'm pleased to join house partners, Rep Scanlon, and Rep Orrall whose bill is H.216. In addition, Senator Tarr has a related bill in health care financing. I'm so grateful to the many people who've signed up to testify on behalf of this legislation as well as the outpouring that I know I have and you have received for this bill and I'm particularly grateful for the expertise of Mass Home Care, which is leading a broad coalition, in support of this bill. So S,67 H.216981 is981 a simple, and I would say compassionate piece of legislation.
As you know, chairs and committees, state policy encourages individuals living with disabilities to get the care they needed home rather than in an institution if they wish. Under current MassHealth regulations for the PCA or Personal Care Attendant Program, paid care may already be paid by family members, by a son or a daughter, grandson, granddaughter, aunt, niece, uncle nephew, you get the idea care may even be provided1013 by a former spouse. These relatives are appropriately reimbursed for time spent caring for a MassHealth member who is at home rather than in a nursing facility, yet there is one glaring omission to this family unit. The spouse of the person who is needing the care. This bill simply broadens the definition of family member to include the spouse of the person with disabilities. It directs EOHHS1042 to seek a federal waiver if one is needed.
To make this change within six months of the bill's enactment. I'll just offer four quick points. Number one,1053 as you know, better than most, there is a severe shortage of personal care attendants caring for MassHealth members with disabilities. The governor has called it a crisis level shortage or words. one study found that there were 4400 unfilled positions last spring alone. There are people on the waiting list. As you know, who can't get the home care they need. Allowing qualified spouses to serve as family members who provide, the care will actually expand the pool of caregivers which I would imagine then would reduce a wait list and allow more people to get the care they need to stay at home. Number two, as of last summer, 26 States have implemented this reform.
13 of these states started permitting spouses to be paid caregivers during the pandemic and are now making this permanent. In addition, the US Veterans Administration also permits spouses to serve as caregivers. So it's a trend. Number three, a 2012 California study compared those who had a paid spouse as a caregiver with those having other relatives who are unrelated individuals as their caregivers. The spending comparison found family provider. Additionally, there were better outcomes for those with relatives as paid caregivers. And of course, we know that the costs associated with at home care is far, far less than nursing home or a nursing facility care. And then number four, the continuity of care is a critical aspect as you know of care quality authorizing spouses to service caregivers reduces turnover among caregivers.
A 2015 study found that turnover among family member PCAs was less than half of non family member PCAs. And we know I know that I know we all can imagine the complexity of caring for someone who is quite ill or having an acute condition It requires a great deal of tracking and the continuity here is, supremely important So today, you're going to hear very compelling stories. I know of people with disabilities or spouses could make a difference in providing loving care. You'll also get this through written testimony. So I joined my colleagues and many others in respectfully urging the committee to act on this bill for the 1st time favorably and report out, S.67 and H.216 so that we can see it over the line. Thank you so much for your time. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank s for your testimony.
SPEAKER7 - Appreciate your time.
SPEAKER1 - Next, we're going to call a house 155 senate 91 and act to assure quality foster care. And first, I'm calling in person, Dolores 4848. Sorry if I mispronounced that. Okay.
SPEAKER5 - Thank you for having us today.
SPEAKER1 - You can move the mic as well. Yeah.
SPEAKER6 - That's what I was going to do,
SPEAKER8 - but that's okay. I follow-up as well.
DOLORES FORTIER - CONCERNED CITIZEN - HB 155 - SB 91- My name is Dolores Fortier. I'm here to ask you to support, and to pass the bill H.155 and S.91. When you do hear from my husband, he is the more technical 1, and I'm the storyteller. Since we started parenting 41 years ago, we have had two biological children and five adoptions, 11 grandchildren, two guardianships, 165 DCF Children, 50 DYS Bail Children, and currently have one three year old boy who is DCF involved. We are also proud to say that our biological sons have grown up to become professionals in the field of serving children and families. Our oldest since high school has worked with children and resident placements and eventually became the assistant director of community placement for a private agency that serves DCF Children.
Our second son, became an early educator. He and his wife began fostering soon after they had their third child. And they have also since adopted three DCF Children. This son recently retired from teaching and is now the director of community planning for a faith based foster care agency in North Carolina. While in Massachusetts, he and his wife, We're also instrumental in growing a foster care and adoption ministry in the Boston area, which increased the number of people serving family through foster care by 100. Let me tell you about the case that we are working right now. I didn't get emotional when I wrote this. Our three year old boy, Manny is the son of our DYS committed youth. He was born into our family and has never anywhere else, but our1410 home.
When his mom turned 18, she left our home without manning His mom asked us to take 3rd party custody, and we agreed thinking it best to keep him out of the foster care system. After a year had passed, DCF asked us to give up custody to them so they could change his to adoption, and they approved us to be his adopted home. This process took six months. After this, and now it has been another year. And what has taken place since is a travesty. Bio mom was advised to give an address in another city so that her case could be transferred to Worcester. This office decided to change the goal back to reunification since the previous one neglected to change the goal on paper. Sorry. I have since been asked for a meeting. I have since been asking for a meeting to discuss the best interest of the child. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER9 - Of
SPEAKER1 - your story in writing.
D FORTIER - Okay. If I could just say all of these things would not be happening to Manny, if we had been allowed to be at the table with the decision makers because we see all the angles of his life and all of our children and we are the best ones to speak up for him, but we are not at the table with the decision makers and the union would give us that voice for his best suggestion. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions?
SPEAKER10 - No. I just, comment. Just want to, acknowledge and thank you for all children. You've provided care for on behalf of the Commonwealth. So thank you.
SPEAKER6 - They're a blessing to us. Well, thank you.
SPEAKER1 - Next, Rick Fortier.
RICHARD FORTIER - CONCERNED CITIZEN - HB 155 - SB 91- Hi. Thank you. My name is Richard Fortier, and I'm here to urge you to support and pass bill H.155 and S.91. My wife, Dolores, and I have been bio foster and adoptive in kinship parents for over 41 years. We are also a DYS foster resource court involved teenagers. While fostering hundreds of children, we have seen the good, the bad, and the ugly in the foster care system. The passing of this bill would be revolutionary because it is about something that should be finally done to give us a voice. Just like the foster parent bill of rights, it should have been done a long time ago. This bill will help foster parents that are being stifled, suppressed, and, yes, retaliated against.
It has finally given us a respect and a collective voice through foster care community. Foster parents live with1599 children 24 hours a day, seven days a week, with the most at risk children who've experienced many traumas often we are helping their mentally challenged and substance abusing family members. We put ourselves at risk with intense scrutiny, untrue allegations, fair retaliation, and elimination of private We have raised that voice in the past to ask for accountability, consistency, and transparency asking that foster be given past case history of the children coming to our homes. We need to be prepared for the fire starters, sexually active, traumatized children that is sleeping in the next room.
Well, or whenever a child returns from a visit early because a worker have to stop to visit because inappropriate parent behavior. After all, it's a foster parent that picks up the pieces of these challenges, broken hearts. At the end of 2022, there are 8,143 children in care, and the DCF budget is over $1,200,000,000 servicing 4000 families in1668 the Commonwealth. However, the number that really gets my attention is retention and recruitment. It's a whopping $50,000,000 problem in the budget, and it's not acceptable. And DYS budget of a $180,000,000. The line item of $4,500,000 is implemented to family voices. Yes, voices.
Why can't foster parents have something guaranteed like our voice being heard? We're not asking for money in this budget. Item. We're not asking for changes. We're asking to have an independent voice that's not managed by DCF. If the voices are heard, while the suggestions implemented, I guarantee that recruitment intention retention would eventually be a smaller part of the budget because Foster parents will start telling people of the good experiences again. Going back to the days when we were the natural recruiters, So please hold in favor of passing this and providing false to parents with a voice. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Okay. Any questions? Next is Mary Hines. Okay. If I call and I miss somebody, I I'll call them again at the end. We're going to move to virtual testimony Jim.
JAMES JAWORSKI - CONCERNED CITIZEN - HB 155 - SB 91- Yes. Thank you. Committee chairs and members. My name is James Jaworski, and it's an honor to be speaking to you. To you today regarding an act to assure quality foster care. I would like to begin by telling you that our family is a success story. Our involvement began in January of 2018 when we became a member of the growing group known as grandparents raising grandchildren. We were blessed with an amazing case worker, Megan Bramhill, and a wonderful support group leader in Cheryl Headhead. Even though our situation has a happy ending, it was not without challenges. We found not all family members such as grandparents, raising grandchildren are eligible for financial support.
In our case, daycare assistance was terminated due to COVID 19 and was not reinstated. The decision not to reinstate daycare resulted in an early retirement and a significant financial burden. We had no formal input into the decision making process yet we were obligated by our love for our grandchild to abide by the decisions based on the meetings that we had no knowledge of. And we witnessed over extended staff. Just trying to keep pace with their caseload, and their heart was always in the right place. The act to assure quality foster care will immediately address two of the concerns that we had The foster parents attend parent teacher conferences, work with guides counselors, school nurses, and other professionals that are daily in our children's lives.
Foster parents are the first to recognize developing trends in the school and at the doctor's office. They see firsthand how the children interact with their playmates in social settings. They can describe how a child handles success and disappointment and are often primary examples of appropriate social cue recognition. Parents and grandparents are currently excluded from the decisions such as what services are available for the child, when and if they will start, and when they will be terminated. The act to assure quality foster care strengthens the commonwealth's resolve to provide support that meets the needs of the1887 children by granting the right for parents and grandparents to negotiate their level of involvement.
The formal inclusion of parents and grandparents benefits the entire team by providing the big picture. All team members will have access firsthand knowledge of the child's daily successes and struggles. That firsthand information then can be brought forward at the appropriate meetings and can be applied to their formal decision process to advance that child's well-being. I urge you to support the act to assure quality foster care and enhance the Commonwealth's commitment to do what is right for the child by providing those closest to the child a formal seat at the decision making table. By allowing them to bargain their SHOW NON-ESSENTIAL DIALOGUE
level of involvement. Thank you for your time and consideration.
SPEAKER1 - Thank you. Are there any questions? Thank s for your testimony. Next, we have Susan Munyan, who's also 1.
SUSAN MUNYAN - CONCERNED CITIZEN - Yep. Her video. Let's see if it'll let me. There we are. Okay. So my name is Susan Munyan. I'm currently a foster parent with one child. I've been involved with DCF for the last seven years now, through all their reorganizations and dramatic changes, and not as long as many of these others with, you know, 20-40 years. Foster parenting is certainly a thank less job. The children often don't really understand and appreciate all that you do for them. I know my own mother died before my son who's now 21 was even born. So I didn't fully appreciate the sacrifices that she made for us until I have a child of my own. So then I did understand.
1995 And1995 so I understand these children continue to struggle and understand what is going on. Lot of lot of problems, a lot of issues that, you know, they're trying to work through. So we are the 1st line that sees these children. And each of them needs a champion to cheer them on, support them, and to have that consistency. It feels even worse, however, being a foster parent when the system that you're working with sees you only as a placeholder, Just to be used as they see fit and not to value what you're doing in respect what you do and who you are. The number of hours, the dead patient and serious juggling of appointments, paperwork, IEPs, while still trying to emotionally support these children in every way is daunting.
It is not reflected in the pay that is provided. Why is there a crisis in foster parenting right now? No beds to be had anywhere. There are lots of caring adults out there, but DCF in the system has gotten the of being deceitful about the children they receive, not telling the entire story, just to have the child placed. Once there, the supports are minimal, and respite is near impossible. Decisions are often made without discussing the situation with the foster parent, we are the boots on the ground. We are the ones to see the day to day effects of what is happening and hear their detailed stories. We coordinate all their medications and advise how that affects them as we are the ones firsthand to witness. The once a month eyes on moment with the DCF worker clearly doesn't get to know them.
2103 We2103 should be collaborate collaborating in a more deceitful way as a direct part of the team, it is more like we are being dictated to. I have repeatedly asked that our foster child be able to visit their birth parents who live in Florida and have legally given her up for adoption. Will even willing to bring her there at my expense so that she will stop worrying that they will die before, she will ever see them again. Oh, that's not letting me go down. Sorry. Sorry about that. Okay. So this has been the 3rd request, and it all seems that they're worried about is that if she gets to regulated while visiting that MassHealth won't pay for it. This is just one of many examples. I feel that all SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you for your testimony.
MUNYAN - So I would look respectfully ask to support in favor of bill, H.155 and S.91 to create a union so that our voices could be heard. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you for your testimony. We have Representative Oral who's on line to testify. You're on mute.
REP ORRALL - HB 216 - Thought I hit it. Thank you, Mr. Chair and thank you to, the co-chair and to the members of the committee for allowing me, out of water. And, I am here today to testify on behalf of a bill I jointly filed with, Representative Scanlon House 216 an act allowing spouses to serve as caregivers, throughout my time, in in the legislature. I constantly heard from constituents who are having difficulties, keeping their elderly or other disabled family members at home. And it's certainly where we wish them to be able to stay for as long as possible. And spouses typically, as we know, will provide certain level of caregiving to their loved ones.
But this bill isn't just about, allowing them to get paid, to do what they would ordinarily do for temporary, condition, you know, such as a cold or even a surgery or something like that. That's not really what this bill intends to do. That spouses will continue to do as they have, throughout history. What this build really tends to do is to look at being a another tool in the kit for when a spouse is facing what to do with a long term condition. With the partner. In this case, the choices may be, do I continue working while I pay someone to stay at home? To do the care?
Do I continue working while I pay someone to do, or to put them in a home, which takes them out of their home? With this bill, the intention is to give that opportunity for them to stay home and have that tool in the kit, like I say, to go to, to have that option to quit their job or cut back on their job, etcetera. And allowed to be paid through the system just as, other caregivers are paid, in order to provide that. So I thank you for the opportunity, and I think it's an important part of filling a gap in the workforce that we have today and, just ask you, respectfully2330 that you would pass this bill favorably2332 from committee. So thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Thank you for your testimony.
SPEAKER14 - Alright. Thank you.
SPEAKER1 - Next online is Cheryl Haddad. Understand this to that is online. You can unmute yourself and test fine.
SPEAKER15 - Sorry.
CHERYL HADDAD - MASSACHUSETTS ALLIANCE FOR FAMILIES - HB 155 - SB 91- My name is Cheryl Haddad, and I'm asking you to support Bill H.155 and S.91. I'm a proud mother and eight young adults. I fussed at 174 behaviorally challenged children. I have one biological daughter, one adopted six guardian and 16 grandchildren and one who I'm raising now. Actually, I have a mission to help improve the DCF system because I grew up in the system as well. I was a foster kid for about three decades, I've worked in the Social Servicing Agency, as Family Resource Liaison, founding president of Massachusetts Alliance for Families.
Presidents of New England Parent Association and National Foster Parents Association. So I have a lot of experience. And I want to look at one thing that's really, really most important is the fossil here in Philip Rights. It was recently passed. And I actually, created the bill 14 years ago, and I'm really excited that it's passed. However, my colleagues Nationally are telling me you really need to have an independent accountability method incorporated into it, that is not tied to DCF. Because DCF is firmly2452 implanted in all services that assist2454 foster parents. It's like the fox running the hen house. MSPCC, for example, in in the Ombudsman’s office, financially type DCF.
And whenever you try to resolve a problem, you go you have to go up the ladder and spend lots of time, talk to, like, two to eight people, saying the same story, and a2473 lot of times the outcome is not what you want it to be. And sometimes you have to hire an attorney. So we really feel that the union would be a perfect remedy because they would be able to identify things that we need independently. Then They could design a fair way to a guarantee accountability with the foster care and bill of rights. Communication also is a very big problem.
With within the Fox American community with government social services and we really feel that the union could provide the best opportunity for half really good communication within department. We really want to have a good mutual respect with each other and we really want to get things working where we feel like we are a piece of the pie where our voices are2524 part of the decision making within the department. Many people going to testify regarding that situation, and I really, would like to I lost my place. Sorry. We'd really like to, ask you to provide support to this bill. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Thank you. Thank you for your testimony. Next online is Carly Burton.
2561 CARLY2561 BURTON2561 -2561 CONCERNED2561 CITIZEN2561 -2561 HB2561 1552561 -2561 SB2561 91-2561 Hi2561 there. Thank you so much, chairman, Livingstone, and chairman Kennedy, and giving me the opportunity to share my story today. I'm standing in strong support for Senate Bill 91 and a House Bill 155 and act to sport quality foster care. My name is Carly. My wife and I have been foster parents, since 2017. I'm also a social worker and during that time, we have fostered three children, including our current foster daughter, who arrived at our home in live 2017, six and a half years ago. She was two years old. She was underweight. She had thinning hair. She was non verbal prone to screaming, crying, night terrors.
And now she's2610 eight years old, thriving in third grade and wants to be Beyonce when she grows up. I, you know, wanted to share our story to let you know that, you know, but just as others have said, being foster parents is really a thank less job, and yet we are the ones that are the 1st line of defense for these children who are traumatized and who have a lot of needs while also being very resilient. Just a couple of things that I wanted to share about our, our experience, and how union would help. During the pandemic, there was a lack of communication about, protections in place for kids and families, both birth and foster families.
Our foster daughter's younger brother has been placed with us for three times. The second and third placement were during COVID, and DCF was not able to get him tested before coming to our home, nor was he nor were they able to provide any information about exposure or level of risk that he had faced. And we were frankly worried not to take him into our home due to re retaliation. This was very challenging because we actually had a very small pod that we had created for our foster daughter and our other daughter. And we had to let those parents know that they needed to be part of this that he needed to join. The other piece is that.
We as foster parents get very little information about her legal case despite the fact that we, again, are2719 the ones that know her the best. We have been fully discouraged to go to hearings. Currently, there is an appeal process. We have no idea nor have been in formed anything about the timeline, the attorneys involved, or anybody else. We want our daughter to be adopted. We love her very much. And we really need a union to help support foster parents. I know my time is up. I will just say that you know, I don't think that I would recommend other folks to be foster parents until a union has been formed to support them. Thank you so much. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you for sharing this part. Next, Tina Karch, also online. Tina Karch. I understand your name. You can test it.
SPEAKER17 - Can you hear me?
SPEAKER1 - Yes.
TINA KARCH - CONCERNED CITIZEN - HB 155 - SB 91 - Okay. Good afternoon. My name is Tina Karch. I am from Dalton, Massachusetts. I have been a foster parent for 14 years. I am a daycare provider for 27 years. I am currently part of SCIU 509 union for daycare providers. I have three grown children two adopted children, and I'm currently fostering for foster children. In August of 2019, I was struggling in my personal life, and I decided to just show up at a parent support group, and Tricia Farley Burier was there. Several foster parents in this group. Voiced problems with false 51A reports. They had no representation. No voice. It woke up.
Their foster children were removed. Adoptions were halted or their homes were closed. I am I'd shyly chimed in at the meeting, and I mentioned how the union had helped me in my daycare for me to reopen after false allegations were made for my now2866 ex-husband. Prior to their union representing me,2870 I felt scared, hopeless, and violated. Early education and care told me to find a new job, and DCF took all of my foster home kids and put my foster home on to hold until further notice. I am2885 so fortunate that Tricia Farley-Bouvier brought this to your intention, because I am the one who, started this conversation, and I'm so ever grateful for her.
The union helped to fight for my rights I was able to reopen with their guidance. I was able to regain my foster care license. Several foster parents in the support group voiced the same problems and concerns. Currently, Berkshire County has a minimum of five foster homes and possibly more under investigation due to false 51A reports being filed. I didn't realize how beneficial the union was until I needed them. Having a foster parent union would help with retention, recruitment of new foster parents. All offices in the state should have the same policies and the same implementation.
Everything is up for interpretation depending on what social workers you talk to or their periods. This causes us as foster parents to be at the mercy of the state for 51A filings. This issue is so important to me because there are so many resources and services that are not available to us. We are an high risk for 51A reports. We have no representation, no voice. And if we have a disagreement, we there will be repercussions such as closing our homes, forcing us to hire a lawyer, policy or adopt and taking the kids that we love out of our home. Care union, what happened at help us advocate SHOW NON-ESSENTIAL DIALOGUE
SPEAKER17 - Thank you.
SPEAKER1 - Thank you for your testimony.
SPEAKER19 - Thank you.
SPEAKER1 - You can feel free to submit any written testimony to the committee. Are there any questions? Next, we have Senator Lovely on them.
SPEAKER19 - Thank you, Mr. Chairman. Can you hear me in your hearing room?
SPEAKER1 - Yes.
SEN LOVELY - SB 103 - HB 207 - SB 107 - HB 206 - SB 108 - HB 188 - Thank you. Good afternoon.3014 Chair Kennedy And Chair Livingstone and members of the committee. I am here to testify quickly on three bills. I will try to be as concise as3022 possible. The first bill is senate number 103, house number 207 an act relative to persons with developmental disabilities. I have filed with our house colleagues, a Representative, Jim O’Day. These bills would update the definition of developmental disability to member the broader definition in federal law, which includes all individuals with developmental disabilities. Specifically, Fetal Alcohol Spectrum Disorder, FASD, is not included in the commonwealth's definition. Therefore, individuals with FAST are not eligible for many services. This would update this portion of the law to include FASD individuals who are clearly.
Developing a delayed as a result of the condition. I hope that you will give the, bills your positive consideration. The next bill is Senate number 107, house number 206, and act relative to queuing and supervision in the PCA program. Filed, again, with representative, Jim O'Day. The PCA program is one of the largest MassHealth funded community based long term care programs in commonwealth, which allows individuals with disabilities to receive physical care assistance. I want to just mark that physical care assistance or daily activities that cannot be independently completed on their own. However, it does not allow for queuing to remind someone, for example, a stroke victim who may forget to bathe or eat. They have the ability to do so, but because of their condition, they will could forget to bathe or eat.
And so they would not be covered. This would not be covered under the peace program. We want to be able to keep people in the community setting. And if we could add in, or queuing, this would really go a very, very long way to assist so many patients and individuals who fall under personal care assistance with Medicaid. Looking for the pop community's positive consideration of this legislation, And the third bill is senate number 108, house number 188. An Act establishing guardians as providers of medical care to support the rights of incapacitated persons. Filed with our colleague representative Sally Kerans. The medical needs of 3000 to 4000 Incapacitate Persons, IPs, and the commonwealth who do not have family caregivers are being underserved.
IPs who do not receive regular medical care, develop avoidable illnesses and conditions that cost the commonwealth thousands of dollars each year. Then the cost of paying these guardians to be able to prevent such outcomes. And this is what this bill would do. It would help to eliminate these unnecessary costs by offering reasonable compensation for the medical care related duties of guardians by professionals, non relatives, and extended family members. I will submit all of this in writing with more information, but also looking for the committee's positive consideration of this, these two bills, and happy to answer any questions. Thank you for taking me out of SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank s for your testimony.
SPEAKER19 - Thank you.
SPEAKER1 - Next, we're going to turn to house Bill 188, Senate 101, sorry, Senate 108, and act established guardians as providers of medical care to support right of incapacitated persons. We have John Ford to testify in person.
JOHN FORD - CONCERNED CITIZEN - HB 188 - SB 108 - Thank you. Senator Kennedy, Riverside, the members of the committee. This is a very important committee, just sitting here listening to the people before you. I'm John Ford.3274 I hold the legal services for a little over 50 years in length. Spent a lot of those years advocating for nursing home residents, and their families and elders in the community. And, this bill will, allow MassHealth to set up, a system for compensating guardians for people who are, isolated, un-befriended, s Senator Lovely mention, and need a guardian, and they're in desperate straits.
And, you know, usually wind up in, emergency room or the, summary process eviction case, all because they need a Guardian and don't have one. And, I've submitted written testimony. So I want to give you the reader's digest version, but basically Our concern is people who are stuck in hospitals, and it was, there was an article in the globe on Saturday. People who cannot get out of the hospital into a rehab on nursing home, not because the probate court doesn't respond, but because there's no Guardian to achieve the discharge from the hospital admission to the nursing home.
We need more guardians and, we think that if that MassHealth treats guardians, you need a guardian in order to get medical access to medical care if you can't give informed consent yourself. So this bill would, would allow myself to set up a system that would, compensate the guardians. However, modestly, in order to have these folks, we estimate between 34,000 to access health care. There is a, there is a system for compensating nursing home residents guardians, but that doesn't apply to people who are in the nursing home whose only income is SSI. $72.80 a month. So, please, I'd like you and your staff to read my correspondence. And hopefully, you'll see the merits, of this very important bill. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you for your testimony. Can we read all our written testamentally submitted. Next, we're going to go online to Paul Linzakis. Oh, sorry. Actually, Paul, sorry, before you, rep representative, Tricia Farley Bugier, is online. And then Paul, you're going to be next.
REP FARLEY-BOUVIER - HB 155 - SB 91 - Thank you so much, Mr. chairman, madam chair. We re I really appreciate being able to testify out of order and on this important bill, in front of you today the work that you do on child welfare is incredibly important, and I appreciate all the thought that you the work that you do in this area. H.155 and act to assure quality foster care is something that I filed with Senator Adam Gomez,3476 a good partner with me and child welfare. And this bill would make, foster parents public employees and allow them to union unionize and collectively bargain with the department of children and families. Now3492 I know that that sounds strange. Why would we have foster parents be able to unionize? But it really will make a difference.
It will be not a typical union, but more like a union like our home care, childcare, home based childcare workers are. We did this back3512 in 2012, and it has made a real difference. For them just like we can do this for foster parents. Last session we did pass, the foster parents bill of rights, which was a step towards making foster parents a valued member of the team. And this bill would give foster parents a seat at the table where they could size those rights and advocates for their needs and the needs of the kids they care for. Foster parents would be able to negotiate things on stipends, reimbursement, to cover the true cost of caring for a child, be able to negotiate improved training and communication with DCF have a seat at the table for, resolutions of, disputes and, preventing retaliation.
I had to tell you is a very disturbing, but one of the number one things I hear from foster parents is the issue of retaliation with DCF. And, importantly, we need better retention of foster parents because that is what will get us better care for roster children. I know this is an out of the box way of looking at this, but quite frankly, it was out of the box when we unionize teachers, when we unionize nurses, I mean, we unionize personal care, assistance. It's only out of the box until it's done. And so I really do believe that we can make an, a difference for the children that need care in the state by supporting foster parents. So I thank you for your consideration. I certainly can answer any questions that you have. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you for your testimony.
SPEAKER22 - Thank you.
SPEAKER1 - Alright. Next, Paul Gonzakis.
PAUL LANZIKOS - DIGNITY ALLIANCE MASSACHUSETTS - HB 188 - SB 108 - HB 206 - SB 107 - HB 216 - SB 67 - Thank you, representative. Livingstone Good afternoon to you and to send to the Kennedy of the members of the committee. On this afternoon, I'm appearing on behalf of Dignity Alliance, Massachusetts. In support of H.188 and Senate 108. Up until a few years ago when I retired, I was, executive director for not sure all the service and the aging services access point on the, not sure. We provided the guardianship service for 30 individuals through a contract with the executive office of Elder Affairs. Refers were limited to those who were, protect your service clients. However, as a community based aging services provider. We saw many other, older adults who were not under protected services.
Who, however, needed the support and services of a guardian and lacked anyone in the familial or social network to perform that role. If this bill is enacted, and I also want to thank, the Sentor Lovely and Representative Kerans for their sponsorship these at risk vulnerable folks would have the opportunity to have the services of a competent, caring, and monitored Guardian additionally, this would facilitate access to needed and appropriate long term care services, whether in facilities or in the community. And3712 since I have a, wheelchair repair bill. We have written testimony being submitted. And, also, H.206, Senate 107 queuing3733
And H 216, senate 67 spouses, caregivers, both of these bills, as I said, I've been I was executive director for over 15 years at not show the services. Up until a few years ago. For most of that time when I was executive director, I was an advocate for both of those bills. These bills have been Before you, now for a number of sessions, these are vital to not only, providing meaningful services to the individual's directly involved, it will help shore up our entire caregiving system at a time when, especially with the compensated workers, we're in in in dire circumstances. So both queuing and spouse's caregivers are an important part of that. So, I'd thank the community for your diligence and urge a rapid action on all four of these bills. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Thank you for your testimony, and thanks for your patience. K. Next online is Adam Lynn.
ADA LIN - PRISONERS' LEGAL SERVICES OF MASSACHUSETTS - HB 188 - SB 108 - Good afternoon, Chair Kennedy and Chair Livingstone. My name is Ada Lin, and I'm a staff attorney at prisoner's legal services in Massachusetts. And also serve as our policy chair. I'm here today to speak in support of the S.108 H.188. An Act establishing guardians as providers of medical care to support the rights of incapacitated persons. My perspective on this issues started form my working on medical parole cases in Massachusetts. In Massachusetts, the medical parole statute allows people who are incarcerated to seek release, if they are terminally ill, meaning that they are likely to dive in the next 18 months, or they are permanently cognitively or physically incapacitated.
Every day, I encounter pea incarcerated people who are ending entering their final stage of life, typically without any support from family members or friends or the community at large, because they have spent so many decades in prison that they no longer have any connections to that red world. Each year, more and more people incarcerated in the Commonwealth find themselves in this position because the percentage of elders in our DOC is steadily on the climb. Massachusetts is one of the oldest prison populations by percentage in the country. Incarcerated people also experience accelerated aging due to poor health prior to and in court during their incarceration. And research has shown that they are physically physiologically 10 to 15 years older than elders in the community.
This means, unfortunately, that dementia is on the rise in prisons and more and more people will require a guardianship support in the coming decades. My colleagues and I regularly encounter people who suffer from cognitive disabilities that are so severe They no longer remember where they are or that they're or that they are even incarcerated. Many cannot remember the names of their loved ones and are regularly getting lost in the facilities that they have lived in for aids. A few months ago, I spoke to one gentleman who told me that he did not need assistance with medical parole because he was in county jail awaiting trial. He kindly assured me that his mother would pay bail and come pick him up soon.
I later discovered that he has3932 been frustrated for longer than my lifetime and that he is serving a life without parole sentence. I have another client who cannot remember my name, gets lost just walking down a hallway, and can't remember conversations that he had just hours prior. The Massachusetts CSC often fails to petition for a guardianship for people with severe cognitive disabilities who are what require support from Guardian. But even when they do, guardianship proceedings can last for months because the DOC attorney is unable to find a volunteer guardian. This is a particular problem for people who are granted medical parole who are too cognitively incapacitated to consent to admission to a nursing home.
If they do not have a guardian, they linger in DOC custody sometimes until they die. Despite the fact that they are statutorily entitled to release, and there is a nursing home that is willing and able to take care of them. This bill would help ensure that the guardians are compensated for the valuable support they provide to some of the most vulnerable people in the commonwealth. It would also encourage more people become guardian so that individuals like my own clients have greater access to people who can help advocate for them, especially as they near end of life. Thank you so much for the opportunity to speak. And I ask you to report this bill out favorably from the committee. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Thank s for your testimony. Next online is Peter Racy.
SPEAKER25 - Thank you, Jared, Livingston. If I may I refer to Scott Harshberger who's been waiting patiently? Former attorney general? Yeah. Words of wisdom?
SPEAKER1 - He's next.
SPEAKER25 - He's next. Sorry.
PETER MACY - MASSACHUSETTS GUARDIANSHIP POLICY INSTITUTE - HB 188 - SB 108 - I just want to add my testimony to the important testimony you've heard in favor of, S.108 H.188, which would create a category of care provider for a professional guardian of the Medicaid program. My perspective is as a founding member of the Massachusetts Guardianship Policy Institute.. We have worked for eight years to obtain funding for the appointment of guardians for the underfunded. It's been extremely challenging. I think you've heard plenty about who these individuals are, and I appreciate deeply others, testimony about people in prisons who are particularly poignant case in addition.
I've been working for the last year very heavily with the and closely with the public Guardian Services in Braintree. Which Now it provides guardianship for more than 80 cases in Suffolk Plymouth and Norfolk counties and we have no public support. It's all privately supported. It cannot expand beyond these three counties without help from public funding There are up to 3000 persons who need such help. I would like you to consider the situation of a homeless person who lives on the open gets arrested repeatedly for misdemeanor's vagrancy or is hospitalized for various care, particularly during the winter season when maybe he just needs a place to be warm. And the Medicaid estimates that each of these individuals costs about $6000 a year in public dollars to be maintained on the streets.
If we add to that, the cost of incarceration and police activities for these types of individuals. It's probably closer to $10,000 a year and I would submit that the cost to provide a competent guardian under the Medicaid program, which would be fairly closely monitored the Medicaid program is not, known for largess in terms of paying for services, but it would make a huge difference in these lives, and the cost of the commonwealth would probably be less than they're paying already. This also applies to4160 people with dementia in housing, people who have hoarding problems, who get no attention until they're hospitalized at fantastic cost to public dollars to the public Fisk, and then they can't be discharged because there's no one to be a guardian.
There are several organizations like the public guardian I think six or eight, nonprofits, again, without public dollars with private donations, providing this providing for these needs, we're only touching, scratching the surface of the problem. It really is a public responsibility, and paying guardians, professional guardians, again, not family members, but professional guardians, as professionals to be a guardian in medical situations, is a tremendous way to lift the boats, lift sort of the rise the tide across the state and provide individuals, competent individuals to be guardians. Please consider this bill. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Thank you for your testimony. And next up, we have former Attorney General, Scott Harshberger.
SCOTT HARSHBARGER - COMMONWEALTH OF MASSACHUSETTS - HB 188 - SB 108 - Chairman, Livingston, thank you, and chairman Kennedy. I appreciate very much the opportunity to be here, and to speak on this very important set of bills, Senate 108 and H.188 sponsored by Senator Joan Lovely. And Representative Sally Kerans. It touches on one piece of a very significant issue, which everybody has talked about. In terms of our responsibilities as a society to those who without us have no one, particularly the elderly, the un-defriended those who simply do not have the capacity to get family or other support. And this is very important. It saves money. That's been described.
It offers opportunities to enable people who would be willing to be guardians if provided a reasonable and modest some, to go forward, trained and accountable for representing people to avoid some of the horror stories we often hear about some of the problems, not only of guardianship being abused, but of no guardians at all whether it's for hospitals, whether it's in the prisons, or elsewhere. So I think this is a real solution and a practical solution to the problem that we are facing in terms of the availability of care with qualified people for those who without us have no one. I speak to this particularly, as many of you may know, although some of you are much younger.
And therefore, don't remember many of us like, former secretary of Elder Affairs, Paul Lanzikos. And I, when we joined an elder protection project, when I was the honor to be attorney general of the Commonwealth that was designed to focus on financial abuse, neglect, and all the other aspects of elder justice. I'm very pleased that attorney general Campbell has with an elder justice unit move forward in this area. But one of the areas that we have repeatedly failed to address, we have not created an office of public guardianship to oversee all of these areas in which we need to be held more accountable and efficient for many purposes. But I think now is an opportunity.
And I appreciate your willingness to consider this bill, which is a small step forward, but a beginning It will help give a voice to some of those individuals who, without us, have no 1. It will significantly assist healthcare settings in dealing with some of these problems. And more important, it will represent to those who without us have no 1, the un-defriended, particularly the elderly incapacitated that we as4393 a society care and care deeply. So thank you for the4397 time for allowing me to join. I'm pleased to be part of this illustrious panel of hardworking professionals who are making a huge commitment to public life and public service. And I thank you, the legislature, the shared or addressing4413 this issue. It's critical. Thank you so much. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Well, thank you for your testimony. Next, we're going to turn to house 192 74 and act allowing certain minors to consent to shelter and supportive services. In person, we have Deborah Silvia.
DEBORAH SILVA - MASSACHUSETTS APPLESEED CENTER FOR LAW AND JUSTICE - HB 192 - SB 94 - Thank you, Mr. Chairman and Chair Kennedy. Honorable members of the committee. My name is Deborah Silva. I'm the Executive Director of the M Massachusetts Appleseed Center for Law and Justice. And I'm here to testify in support of House 192 and Senate 94.An Act allowing certain minors to consent to shelter and receive supportive services. However, I am recommending that the bill be amended to a supply only to consent, for supportive services and not shelter. And I'll explain our reasons for this recommendation in just a second. Massachusetts Appleseed uses research and advocacy to develop systemic solutions to social justice issues in three policy areas, educational justice, access to justice, and youth homelessness.
The organization has been working on policies supporting youth experiencing homelessness for more than 10 years and 2012 became a founding member of the Massachusetts Commission on unaccompanied homeless youth. We also lead the Massachusetts homeless youth legal network a statewide project initiated by the American Bar Association that works to identify and dismantle legal barriers impacting youth experiencing homelessness. In January of this year, Mass Appleseed worked closely with representative Kay Khan and Senator Adam Gomez to file this bill after conversations we had last year. With certain providers that made us aware of the need for legislation allowing homeless youth between the ages of 15 and 18 to consent on their own to receive essential services. At that time.
We believe that allowing young people in this aid group to also consent to shelter, would be beneficial. After the bill was filed, we reached out to additional representatives of organizations that currently provide services and shelter to young people and heard that some of them had concerns about the bill specifically relating to the sections relating to shelter. Those concerns were predominantly focused on the possibility that the bill allow young people to be placed in shelters that serve adults. The providers that we spoke to explained to us that at that time, that allowing minors and adults to be sheltered together was inappropriate and could put the youth at substantial risk of harm.
We held a listening session about the bill this summer, which was attended about 10 additional providers and again, heard strong support for consent for services for reservations about shelter due to safety concerns. Because of these safety concerns, we will be submitting along with written testimony a proposal for an amendment to the bill that was limited to only allowing minors consent to support of services and re would remove all references to shelter in the bill. In 2018, Massachusetts reported close to 3800 on accompanied youth, although that is likely an undercount. In the 2022, Massachusetts youth count sponsored by the unaccompanied homeless youth commission, researchers found that 34% of respondents had left home permanently before the age of 18.
And the average age of these respondents left home was 15.6 years old. The youth count researchers also found that the respondents who left home as minors were very often less likely to receive the help they need one barrier to on house minors receiving the help they need is that they are unable to access supportive services unless they are able to contain obtain the consent of a parent or guardian. Because many of them no longer have contact with their families, this puts essential services that could oh, Well, this puts essential services that could help them meet their basic needs out of out of reach. Allowing homeless youth to provide consent for themselves would greatly, greatly assist young people. And, yeah. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank thank you for your testimony. And we look forward to the written testimony, particularly, the red line that you referenced. Next online is Haley Kelly.
HALLEY KELLY - MASSACHUSETTS DEMOCRATIC STATE COMMITTEE - HB 192 - SB 94 - Hello. I would like to start off by acknowledging that I've had the flu for the last few days. So I'm not quite at the standard. I usually hold myself, and I don't have a script like I normally do. But hello, members of the committee, I'm Halley Kelly. I'm the non binary representative on the democratic state committee. I'm testifying in support of this bill because I had a lot of friends showing up when I was a teenager who turned to self harm suicide attempts and, illicit drug use, because they viewed it as their only way out of being abused by transphobic parents. When you're young and clear, you have your choice as likely to, attempt suicide in any given year if you have unsupportive parents.
And, because of that many young queer people, if they don't attempt suicide, they tend to run away, or they tend to be kicked out of their homes. That is why, the queer homeless, queer youth are so much more likely to be homeless. We get pushed out by our homes by parents who claim that they love us, but they really don't. Love is not abusing you for being trans, or non binary. And so what this means is that queer youth when they escape these very dangerous homes, as minors, they tend to avoid support services because they're afraid of contacting any homeless shelter or any support, because they're afraid of being back into their homes in a dangerous environment. I know of people, from around the country who had ran away, and then the state forced them back into the parents' home.
And within a week, they had attempted suicide. Allowing youth to consent to services and shelter, would mean that less, queer people try to take their lives. I know, like, we like to think that we're very progressive and we have a lot of accepting parents in our state compared to rest of the country. But the rest of the country two thirds of youth don't have accepting parents. And I know a lot of people in this state, including myself who had very transformative parents. Allowing kids to get these resources means that they won't be turning to underage institution, which per youth are also like three times more likely, to be, doing it when they're homeless because they're trying to just get food. So please support these bills, and please, stop letting, queer homeless youth die. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you for your testimony. And also thank you for choosing to testify virtually if you have the flu. Everyone in this room appreciates that. Are there any questions? Okay. Thank you. Next, we're going to turn to house 202 and act expanding wheelchair protection for consumers with disabilities. And in person, we have Diane Raska?
SPEAKER29 - Correct. That's no. Thank you.
SPEAKER1 - Sorry about that.
DIANE RACICOT - PAYER RELATIONS OF NATIONAL SEATING & MOBILITY - HB 202 - No. No worries. I'm not great at getting names now either. So I do appreciate the chair and committee members letting me speak today on House bill 202. An Act expanding wheelchair protection for consumers with disabilitiesMy name is Diane Racicot. I am the vice president of Payer Relations of National Seating & Mobility. We are located in, Wilmington, South Grove, Chicopee, and Franklin, Massachusetts servicing the wheelchair across the state of Massachusetts. In my role with National Seating & Mobility, I contract with all the insurance plans throughout the state and nation also work with Medicaid office and CMS and also work with policies with advocacy groups within the state.
This bill is helping to address some of the vital that we're dealing with in a wheelchair repair bucket. Over the past four to five years, we've seen a mass exodus of providers out there doing these type of services. Part of those problems is related to how the policies are set up with insurance plans. Also, the fact, unfortunately, in the past five to six years, reimbursement rates have been fairly stagnant. And for example, Massachusetts itself, the Medicaid has been in the same place since the 2018. CMS has had some competitive bids in a race to, I hate to say the race to the bottom, but that's the reality of what we're dealing with. The unfortunate thing for us providers in this space, our cost of doing business has gone up exorbitantly.
And, unfortunately, during the PHE, it went up way exorbitant from the supply chain shortages. No longer having staffing, etcetera. What is great about House bill 202 is starting to get to some of those root causes of why you're not seeing providers out there doing these service is you're down now to about four of us in the entire state, which is not enough. There's too many clients out there that we need to service, and we're back blog, and we need the help. one of the things that's real vital about this bill is helping remove prior authorization. It's a policy that we'd like to see Keep in mind, your4992 clients, the members are already been approved4994 for that piece of equipment.
Their life of a chair is about five years. So they expect to have repairs routine maintenance done on that. Unfortunately, we can't, even if someone comes into my branch, I can't service them right then and there. I have to get an approval to do that repair. That delays the client at least five to 14 days. Sometimes three weeks depending on the insurance plan we are dealing with. Remove all their prior auth that's always approved anyways by 98% helps cut down that time for that member to give them out, enjoying the community, doing the things they every day. The other thing that's vital about this is a giving us reimbursement for those repair services. Just to give you guys an idea, what I go do in repair It typically takes two or three visits.
Unfortunately, when they're down, we have to go to their home. They can't always get to their branch. We would love it because we have all our there to do it. But again, if I had to get a prior auth, I may have to delay you. The other thing is with those services, we don't get reimbursed for evaluation time. We don't get reimbursed, but then we're rolling my trucks out every time I go out. And that's two to three times. The nice thing about this MassHealth even recognized that issue this year put in place at least an evaluation. It's a small amount, but it's the beginning, but we need those type of policies for all the insurance plans. That's a small constituent for the team. Thank you for your time. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER30 - Thank you. And I will submit, Mike.
SPEAKER1 - Thank you. Any questions? Thank you. Next, we have Wayne Blue.
WAYNE GRAU - NATIONAL COALITION FOR ASSISTIVE AND REHAB TECHNOLOGY - HB 202 - Thank s, Good afternoon. Chairman Livingstone and, Chairwoman Kennedy and all distinguished members of the committee. My name is Wayne Grau and I'm the Executive Director for the National Coalition for Assistive and Rehab Technology. We call it NCART. for short, and I'm here to testify in support of H.202. NCART is a nonprofit National Advocacy Association, and we work with individuals that are in need of complex rehab technology equipment We call it CRT. Think of the power wheelchairs and so forth. CRT is prescribed by a physician and it is also customized to meet the5125 individual medical and functional needs of the individual with disability.
The complex rehab industry5131 definitely recognize that that there is a problem with the timiness of service and repairs that it needs to be addressed. While issues such as supply chain and labor shortage still exist, we believe H.202 offers a comprehensive solution for Massachusetts residents utilizing CRT equipment. Diane mentioned a little bit about the prior authorization, the bill would eliminate prioritization only for repairs. Okay? And on that, what you're having is it does delay it anywhere five to 14 day is the whole process. Okay? And it does require us a number of times. Multiple times go out5164 and fix the issue. So as an example, batteries which every power wheelchair needs if I get a call, I go to the patient's home and do the assessment.
I say, yep, your batteries are bad. The logical question they're going to ask is do you have them on the truck? I sure do, but I can't give them to you. I'm not allowed. I got to drive back to my facility. Contact your doctor in some cases. Get a prescription or medical documentation that you still need the chair to submit all that to them and then wait five to 14 days to get the approval to drive back out and give you those same batteries. It just doesn't make any sense. 98.3% of the prior approvals go through the first time. And the insurance companies know that the people need the equipment because they establish the medical need when they authorize the delivery of the chair.
As Diane mentioned, MassHealth is way ahead of the curve on this. They basically said for every, you know, for any repairs that are less than a $1000, you can repair it right then and there. So for this instance, for the batteries, I could repair it right then and there for that for that consumer. Other insurance companies. I can't. They've got to wait. Okay? The bill also will require CRT providers to service the equipment they provide to the individuals in the state. Okay? We feel that's incredibly important. Our members are getting about 30% more calls from consumers who they didn't even provide the equipment to. Okay? And it's just causing a bigger and bigger backlog. So that's a problem.
So we want it as a climate in the state. Another thing we would like to address is a concept that came from the consumers, which is to and we fully court to go ahead and offer coverage for preventative maintenance. Right now, we are not allowed to repair the equipment until it breaks down. And that a lot of times leads these folks stranded. Then on top of that, the delay for the prior authorization, this could be a week or two or even longer. Okay? We think the Venetian does it. Thank you very much for your time. We appreciate. We believe H.202 is comprehensive for all folks, living in this, Commonwealth. Thank you, sir. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Thank you. And, we've been joined by the president of Sikola's online. Now we're going to turn to virtual testimony 1st Cricket.
SPEAKER31 - Hello? Can can you hear me?
SPEAKER1 - We can.
RICK GLASSMAN - CONCERNED CITIZEN - HB 202 - HB 378 - SB 152 - SB 103 - HB 207 - Alright. Thank you. Chair's members of the committee. Thank you for the opportunity to speak. I'll be talking about two different bills this afternoon first, to comment on House5326 202. An act expanding wheelchair protection for consumers with disabilities Our concern is that it isn't that. It's, it's a watered down bill and it's a flood bill that, as you can tell, is sponsored by the industry There's a much more robust bill that's in Senate ways and5344 means now. So here's the problem. If you need to get your chair repaired and your on mass health, you're essentially up against a duopoly to national providers, both controlled by private equity that in the real world routinely fail to provide adequate customer service. People wait weeks. Sometimes months for repairs to be completed.
They're often stuck at home. They can't get to work, school, or medical appointments. This bill house 202 doesn't expand or strengthen warranties. It doesn't level the playing field by strengthening consumer bargaining power or specifying times to respond to strand to consumers. House 378 senate 152 in senate ways it means does that. It said this bill provides for a fee schedule guaranteed government price for doing repair work without any disclosures of corporate earnings or any explanation about why the costs can't be covered through the crisis charge when wheelchairs first sold. It provides for standards to be creative for timely repairs. That's a good thing, but there's no provision on how consumers can enforce them.
And it suggests the providers may be able to comply by filing an attestation statement. And it purports to end prior approval. Again, that's a good thing. But it's largely impossible to Medicare, which is a federal system. It's fine to end prior approval in cases where state law could do that. But it's not a solution alone to the current crisis. And without other more robust protections, it does this bill does not warrant your support. So sticking with the theme of looking past labels, we wanted to speak in support of Senate 103 and house 207. This is a bill to expand adult eligibility for DD services. And I'll say that good lawyers know that you can't understand a statue until you've read the definitions. Otherwise, you'll be fooled, and the sign over the door says Department of Developmental Services, and you think that's where you arrived.
But if you read the legal definitions, you'll see that our DDS only provides services to adults with intellectual disabilities, autism, and two rare conditions. All people5470 with other developmental disabilities, CP, Familial Dysautonomia and Williams Syndrome, Spina bifida, FASD, and so on. They're all out in the cold. And so we are, asking that the Commonwealth moved to the federal definition of developmental disability. It's the standard used in 27 other states in about 20 other states, there's an intermediate standard that's still more robust. And, in that way, we can avoid leaving people behind will still allocate services based on severity and need, and subject to appropriation, but not leaving people behind based on their diagnosis. So we hope that you'll support that that legislation. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions?
REP LIVINGSTONE - So with respect to house 202, it's not that you're necessarily opposed to the text of house 202. You just find it it's not as comprehensive as the Senate 152 that you referenced?
GLASSMAN - I think I think we are opposing the bill. I think it has some elements in there that if they were there alone would be worth supporting. Certainly, eliminating prior approval as to repairs is, I think, a fine thing to do. But the bill purports to provide consumer protections. I think it's intended to substitute for the other pending legislation and by not providing consumer protections in a more, meaningful way. We think it will make it more challenging to focus on those other issues, which have to do with protecting consumers who are stranded and how quickly you need to get out to help people when wheelchairs are under warranty and someone literally can leave their home to go to school, work, or medical appointments, for example, and why it takes weeks or months at a time. And most other states have more robust consumer protections. This legislation doesn't move us towards providing comparable protections for Massachusetts, wheelchair users. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any other questions? Well, thank you for your testimony. Next, we have Ellen Lee
ELLEN LEE - CONCERNED CITIZEN - HB 202 - HB 378 - SB 152 - Hello. Dear chairs and members of the joint committee, my name is Ellen Lee, and I'm with the spinal cord disorder as first myelitis and a resident of Arlington. I'm opposing H.202. And act expanding wheelchair protections for consumers with disabilities because it does not actually do what it reports. As a power wheelchair user, I can attest to the urgent need for a bill that actually does provide these protections. Looking back over more than 10 years of seeking wheelchair repairs. So not a recent supply issue, there were problems every single time. No exceptions. When I needed help for replacing motors to tires, repairs have always taken months, Phone call is not returned. Long delays for a tech evaluation followed by another long delay to actually do the repair multiple times, deliver parts that were not correct.
All of this waste time and resources. Most importantly, it means people like me are left with a faulty or inoperable and even dangerous wheelchair to use during this unnecessarily drawn out process. For example, a bolt fell out of my headrest. And the simple repair took three months. In the meantime, this lack of support caused me three months of pain and fatigue. When the switch box on my power box broke off and was dangling, it also took another three months to replace. This controls the function of my chair. And while I was waiting, I worried. What would I do while waiting for it to get fixed? These long delays are unacceptable. They're extremely distressing, and they jeopardize our well-being and our health. Wheelchairs provide independence and freedom.
Wheelchair users need a bill that will actually help5726 by providing reasonable timelines for evaluations that are enforceable. Offering loaner chairs when wheelchair is inoperable, requiring common parts to be available to speed up the process, authorizing the attorney general's office to intervene when necessary, and expanding the warranty to cover wheelchairs for years. Instead of H.202, a watered down bill of what consumers really need. Fortunately, there is a bill H.378 S.152 currently in the Senate ways and means that will strengthen our bargaining power and specify times to help consumers stranded by lack of properly working wheelchairs. We need a bill that levels the playing field by holding the wheelchair industry accountable. Please help wheelchair users by not advancing H.202, which does not strengthen or expand warranties. We need a true solution to this crisis. And H.202 is not that. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you for your testimony for sharing your personal story. Are there any questions? Thank you. Next, we have Doug Wester doll,
DOUG WESTERDAHL - NUMOTION - HB 202 - Good afternoon. My name is Doug Westerdahl, and I'm vice president of field operations for Numotion. We are a national supplier of complexity of technology, and we have locations in Taunton and Worcester. Numotion support H.202 and request the Massachusetts joint committee on children, families, and persons with disabilities passed this important legislation to address timely wheelchair repairs. In addition to the challenges, H.202 addresses, which have already been mentioned by others giving testimony. It addresses reimbursement policy to include payment for all services performed. Today, service providers are only reimbursed for the technician time of point when the actual repair is being done in 15 minute increments.
This is after much time and labor has been expended evaluating and diagnosing the repair needs in addition to any travel time and costing curve. In many cases, technicians spend more time traveling to customers than they do evaluating and performing repairs. I understand firsthand the importance for wheelchair users to have timely access to service and repairs. Complex wheelchairs are designed configured to meet each individual's medical, functional, and positioning needs while preventing secondary complications such as pressure sores contractors and respiratory distress. It is imperative that this equipment be maintained in proper condition to prevent further complications that can lead to inpatient stays with higher health care costs.
Numotion has made significant investments to improve how service and repairs are performed more efficiently to reach customers faster. These investments include adding staff dedicated, to dedicated call centers for inbound service and income needs, adding technology with remote service capabilities that enable technicians to evaluate repair needs through live video significant facility modifications and improvements to5942 accommodate in shop repairs. Enhanced driver routing tools to reduce drive time while increasing customer service time in the field. These combined investments and infrastructure or changes are just part of a much larger need for reforming the provision of complex wheelchair service and repair. H202 is positive public policy that addresses key issues necessary to improve timely access to service and repairs for consumers. Thank you for your time and consideration of these comments. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you for your testimony. And next we have Harry Weissman.
HARRY WEISSMAN - DISABILITY POLICY CONSORTIUM - HB 202 - HB 378 - SB 152 - Good afternoon. Chair's Livingstone and Kennedy and members of the committee. My name is Harry Weissman, and I'm the director of advocacy at the Disability. Policy consortium, a statewide disability rights advocacy policy and research organization in Massachusetts. And I'm testifying today in opposition to how to build 202 An Act expanding wheelchair protection for consumers with disabilities. DBC, along with Disability Law Center of Boston Center for Independent Living, Easter seals and a long list of other organizations across the Commonwealth led by and representing the interests of people with disabilities have advocating for S.152 and H.378.
A bill that would expand warranty protections for wheelchair users and hold wheelchair providers and manufacturers accountable when they leave their consumers stranded with broken equipment. Map Bell was voted favorably out of the joint committee on consumer protection and professional licensure after three hour hearing in May dedicated solely to testimony on that bill with 40 people testifying in support, including wheelchair users, advocates, doctors, academics, legislators, family members, and the attorney general's office. S.152 and H.378, sometimes referred to as the wheelchair warranty bill, now sits in what the Senate reason means just as it did last session before passing the Senate unanimously during in level session.
The bill being heard today, H.202, was introduced by the wheelchair industry, the same companies who opposed the wheelchair warranty bill in May, and it doesn't have any support from people with disabilities or any organizations representing them. It's merely a diversion from the bill that does have support from the community and stands a chance at improving the dismal state of the current wheelchair repair process. It seeks to eliminate prior authorization for wheelchair repairs, which may be impossible without changing federal law in way. And while it extensively requires repairs to be done in a time timely manner and define what that means, it merely kicks the can down the road with a stakeholder process that has no timeline attached to it.
As opposed to setting specific, reasonable, enforce, enforceable timelines for crucial steps in the repair process, particularly for situations, whereas the consumer is stranded at home as the wheelchair warranty bill does. Then we respectfully ask the committee to support reforms to the wheelchair repair process by working with advocates and your colleagues in in the Ways and Means Committee to pass S 152 instead of giving this watered down industry sponsored bill at the time of day. Thank you. And I'd also want to take a moment to express my appreciation to this committee for, consistently making a strong effort to have, captioning and ASL interpreters at your hearings. It's something that we have DPC have been working on as well. And, so thank you for making, these hearings accessible for, all residents of the Commonwealth. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Thank you for noticing, and thank you for your testimony. Are there any questions? Alright. Thank you. Next, we're going to move to house 206, Senate 107, an active healing its provision in6183 the PCA program. And first, we6185 have Morris Sullivan.
MAURA SULLIVAN - THE ARC OF MASSACHUSETTS - HB 206 - SB 107 - SB 103 - HB 207 - Good afternoon on our both chairs and members of the joint committee. Thank you for the opportunity to speak in support of two priority bills for the ARC. Updating the definition of developmental disabilities and PCA queuing and supervision. Senator Lovely and rep O’Day. I'm Morris Sullivan, the Director of Government Affairs and Health Policy for the ARC, and I'm grateful to be here to amplify the testimony of my colleagues, Senator Lovely, and the voices of the constituents who could not be here today. Starting with S.103 H.207, this bill will adopt the federal definition of developmental disability in place of the current state definition. And will bring eligibility for all adult individuals with developmental disabilities or DD.
This means Massachusetts will finally address these forgotten constituents. I love my job, as you know. But you can imagine how terrible it feels when I have to tell families that their loved ones with DD are excluded from supports. The ARC, this causes us perturbation, and, we want to make social and legal change, so we bring this to you. I have detailed testimony to submit, but my three main points include the need, which is for adults with DD turning 22 who require supports and are falling off6289 the service cliff. The current limit patient. DD services are only available to those with autism, Prader-Willi, and Smith-Magenis syndrome. And then the excluded, this brings access to persons with disabilities such as cerebral policy in fetal alcohol syndrome. So let's open the door to embrace all people with disabilities.
And briefly, I want to speak about a bill that's very personal. H.206 S.107, which will require the PCA Program to include queuing and supervision as a covered service. I've spent more than a decade, shaking head at each6331 of my son's annual PCA evaluations. How can we still be overlooking cognitive disabilities like autism?6339 My son Neil, who has profound autism, has many skills, and I want nothing more than independence and dignity for him. But his safety and hygiene matter. So I prompt, I cue, and I supervise. For example, he can't physically, he can physically get in the shower. However, he will just stand there until I prompt him with my voice or with visuals. Sometimes that gets him started and then I6367 will cue him like this. Lift your arm meal, soap up that pit meal, and6373 so on throughout his whole body. PCA covered time should include the needs of people with disabilities like me. Thank you for your support. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you for your testimony. Next, herb Cabral.
HERB CABRAL - CONCERNED CITIZEN - HB 206 - SB 107 - Good afternoon, everyone. My name is Herb Cabral. My wife and I have a 28 year old son in Joe with an autism diagnosis. Joe qualifies for AFC, adult family care. My wife has to be the care provider because I'm the court appointed guardian. I be both. Joe also qualifies for shared living, but our agency cannot find a provider. My wife lives with Joe in order to be AFC compliant. We own two condos side by side. Joe could live pretty much independently in one unit, but would still require services, which should we provided from next door, but that would not be compliant with AFC. Joe could potentially be qualified for PCA services which would allow him to live more independently.
But the definition of services provided under current PCA standards, really not applicable to Joe. Sounds confusing. Right? We have to manage Joe's disability, how Joe's disability manifests itself in every situation at home at work and in the community. Joe's capabilities can change from day to day. My wife and I, Joe's caregivers managed skill acquisition at regression daily across all of Joe's skills through scheduling, prompts, queues, and data collected. We don't necessarily have to do tasks for Joe, but we have to follow-up on what was planned and accomplished and set up the next day's plan. Prompt can and queuing legislation changes would allow Georgia to live more independently while still relieving receiving the daily services he requires.
Currently, my wife and I live, we are dictated by the6496 requirements of Joe's benefit structure The coordination of Joe's benefits and services requires is pretty much a full time job. It's really difficult to navigate a multi layered system of federal, state, and local benefits system that is engineered to marginalize individuals with disability with earning and assets limits benefit interdependencies and intricate system navigation with no GPS. There needs to be big changes. Legislation by prompting and queuing. ABA services over 21 and guardians being paid caregivers are examples of legislation that sit in slate of limbo for years, while individuals with disability wait for change that will positively affect their lives and the lives of their families.
We identify and manage the maximum benefit structure Joe qualifies for while remaining compliant with each individual benefit. Our family status, we can't find a living provider and don't technically qualify for PCAs who are making AFC work, which limits Joe's independence and quality of life. Independence should be paramount in any benefit structure. Please, please, please take action to move forward on H.206 S.107 and help retool our legislative system to be more inclusive and foster independence for individuals with disabilities. Thank you to all the members of the joint committee on children and families with disabilities for reading and hearing our stories and all the work you do in the Commonwealth. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Next online, Kathleen Emerald.
KATHLEEN AMARAL - THE ARC OF MASSACHUSETTS - HB 206 - SB 107 - Good afternoon. Thank you, honorable committee chairs for this opportunity to speak today in support of Senate Bill 109 and House Bill 206. An Act relative to cueing and supervision in the PCA program. I am here, like my colleague, Maura, on behalf of The Arc of Massachusetts, but I'm going to share a personal story related to the benefit and the need for queuing and supervision. As parents, we hope our children grow up to obtain the skills and abilities to live good lives. Those of us with children with disabilities on our best day, remain hopeful for health, continuous progress, and lifelong learning opportunities. We also rely greatly on eligible supports and services and undoubtedly caretakers and PCAs to assist our loved ones in living that good life.
My son, requires assistance in all areas of daily living due to a rare genetic diagnosis and complex medical and developmental needs. However, he takes incredible pride in the attempt, and he enjoys trying to mimic the process. He knows where the coffee pot is, for example, and where to find the Keurig pods, but he does not have the dexterity or fine motor skills to take them out one by one. He knows how to turn on the faucet, but not to navigate the hot versus cold. He knows shoes go on feet without notice of the6684 matching pair nor the ability to tie them. He loves to eat but can't do so safely with much independence. But he observes and he tries and we relish in his obvious desire to do all the things that we do with ease. In Massachusetts, the language only permits PCAs to perform physical hands on assistance with no consideration of the nuanced needs for prompting, queuing, and supervision that go hand in hand with so many tasks as more described visually.
And it can be a terrible safety issue. During a recent, reevaluation for PC services, for example, I described the need for additional time to shave my son safely. As he's gotten older, this is an appropriate, activity of daily living. But it takes considerably extra time to keep him still while bringing that sharp razor blade to his neck and face. He loves clothes and I consider him to be quite stylish should he enjoys being clean and well shaving, well shaving, something that he deserves. However, his disability makes it almost impossible for him to stay still without constant prompting and redirection. And it is not safe to do so without additional time to account for the added, queuing and prompting need. As a way to keep him still. In contrast to Massachusetts, very limited scope, there are several examples of states that do allow for queuing and supervision. New York, as one example, recognizes queuing and prompting that may be needed for safety monitoring. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - No problem. And feel free to submit written testimony Absolutely.
SPEAKER17 - For
SPEAKER1 - the rest of the information. There any questions?
SPEAKER10 - Yeah. Thank you.
SPEAKER1 - Thank you. Actually, I guess I had 1. Are you still there? Okay. It could have lost her attention. Next is H207, Senate103, an act of relative to persons with disabilities, Henry Buckley. And next is a panel of Patricia McNeal and Alexander McNeil.
SPEAKER36 - It's Patricia in Alexandria. Okay.
PATRIA MCNEIL - CONCERNED CITIZEN - HB 207 - SB 103 - Hi. My name is Pat McNeil. It's my son Alexander. He has he's a 31 year old with FASD, and does not qualify for DDS services because we have a, old definition of developmental disability. I'm here in support of the an act relative to persons with disabilities. Here's a nerve neuro developmental disorder caused by prenatal exposure to alcohol, brain damage due to alcohol and utero. The challenges are lifelong. He meets five of the seven limitations of the DDS qualifications for eligibility, but because he have FASD and doesn't have one of the three qualifying diagnosis. He does not qualify for services. My son, he was in special education services until he was 22 years old.
He ended up in a out of district, out of, state, school. We spent the state of Massachusetts our town, ourselves, spent close to three quarters of a million dollars on his education and securing his education. And if we put in my lost wages, probably close to a $1,000,000. And when he turned 22, he was not eligible for any services. It makes absolutely no sense. He needs long term supports. We are lucky. We have a lot of family support. Others don't. Suicide, jail, drug abuse, homelessness, etcetera, are all results of not getting supports for individuals with an FAST. Mass DDS includes FASD in a, definition for children, but not for eligibility for adults. It doesn't go away. I that I just don't understand. The developmental disabilities assistance in bill of rights act 2000 defines developmental disability.
However, 23 years later, Massachusetts has not6975 adopted this definition. As it is right now, Massachusetts is one of those narrow and restrictive definitions in the country, both the same as Florida's. There are many states that have the same definitions scheduled a very close Louisiana, Maine, North Dakota, Alaska, North Carolina, Virginia, we pride ourselves in Massachusetts as being inclusive and non discriminatory that we are educated, that we are progressive, and compassionate, and leaders. That we are a commonwealth that takes care of its most vulnerable, but we are not. We're not doing it. We pay lip service to that. The federal government and all those other states, I not as restrictive as we are. Inclusive is the word that is used all the time. We do not even include people who have the same needs.
Who have the same disability, but people with same limitations don't get equal access. There is no7022 equity. Why I don't understand? Is there stigma? I just am, dumbfounded. As it stands right now, not only eligible for not eligible for services from DDS, isn't even counted as not getting them because he's not recognized as having a DD. As more and more legislation is being presented, to give people with DD, more help with housing education access to appropriate medical and mental health services, job training, audit legislation, that says that for people with developmental disabilities is not for all with the DD. It will limit access to people like my son. I asked for a positive consideration, and my son and many like him deserve to have the same supports as others. SHOW NON-ESSENTIAL DIALOGUE
And, Sasha, the elevator didn't have nothing. You're not gonna say anything? He said you wanted to. I'm good.
SPEAKER34 - Right here? Yeah. Okay. So did you wanna talk about job coats? No. I'm good. Okay.
SPEAKER9 - We tried.
SPEAKER34 - Thank you for coming. Yeah.
SPEAKER36 - And we can answer any questions, and we'll be happy. Well, I guess maybe a more private setting could be more comfortable. Absolutely. Thank you.
SPEAKER1 - And you're welcome to submit written testimony as well, if you wish.
SPEAKER12 - Yeah.
SPEAKER36 - Maybe we can do it fine.
SPEAKER1 - Thank you for your time.
SPEAKER36 - Thank you.
SPEAKER1 - We're gonna go back online
SPEAKER9 - to, I guess,
SPEAKER1 - the rest of the way. Kristen Erickson,
KRISTEN ERIKSEN - MASSFAS - HB 207 - SB 103 - Good afternoon. Distinguished members of this committee. My name is Kristen Erickson, and I stand here sit here as a Massachusetts resident. The program coordinator from MassFAS and most importantly as a mother. My twins are now 16 years old. They were adopted through DCF and have FAS, Fetal Alcohol Syndrome. Thank you for giving me this platform to speak on behalf of families who face this unique and daunting challenges every day. I'm here to advocate for S.103 H.207. The crucial legislation proposes a in the federal definition as has been described by others already, aligning Massachusetts with the majority of the United States and using the federal definition of disability.
Opening doors for countless families and individuals and develop with developmental disabilities, including individuals with FASDs. Let's make it clear. Much like autism and other developmental disabilities, FASDs are lifelong condition that impact daily living skills, money and time management, and emotional regulation, among other things. They are in essence locked out of essential services under the current definition. The passage of this bill would recognize their struggles providing them with necessary supports in order to be productive contributing members of society. I can tell you firsthand that the demand for such services is overwhelming and urgent. Every day at Mass Fest, we encounter more and more families desperate for help.
My inbox is full of stories that are all variations on the same heartbreaking theme. The system is failing us. These are not abstract numbers. These are people. Real families with real struggles much like my own. As a six year old parent, I face the unsettling reality that my children will outlive me. Who will support them when I'm gone. The caregivers who face similar questions can't even attend this hearing because our children can't be left unsupervised. Their absence here only underscores the dire need for this legislative action. Our current system lacks the framework to provide adequate care, leaving families with bleak options, and little hope. Just last month, I worked on a case involving a 48 year old man who lived alone for three years after his mother passed7256 away.
He eventually became severely ill and now has nowhere suitable to return. This7262 is just one of the tragic stories among many high the human cost of legislative inaction. So esteemed legislators, legislators, the time has come for change I urge you to put yourself in the shoes of these families like mine and act. Support S.103 207. By doing so, you're not just changing laws. You're transforming lives. You're offering hope to families and a more inclusive compassionate society for all of us. Thank you for your time, your compassion, and considering this action. I remain hopeful that this with your support, we can pass this legislation and like the way for a brighter, more equitable future. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you for your testimony.
SPEAKER37 - Thank you.
SPEAKER1 - Next is Jennifer Or Trend.
JENNIFER BERTRAND - THE MASSACHUSETTS DEVELOPMENTAL DISABILITIES COUNCIL - HB 207 - SB 103 - Good afternoon. Members of the committee My name is Jennifer Bertrand, and I'm the Disability Policy Specialist with the Massachusetts Developmental Disabilities Council, the MDDC. I'm here today to provide some information and analysis regarding House bill 207 and Senate Bill 103 relative to adopt the federal definition of developmental disabilities. As you may know, the MDDC is federally mandated to educate policy makers about the intent of legislation and its impact on people with Developmental Disabilities, DD.
In addition, we work to improve the system of supports for individuals with Developmental Disabilities and their families by bringing together lawmakers and advocates so they're included in public policy decisions. As Rick, from the DLC and others mentioned earlier, Massachusetts does have one of the most restrictive adult eligibility7379 standards for developmental disability services, DDS. There are 27 states that have less restrictive definitions and or the federal definition of developmental disability. That means7394 that there are many adults in the commonwealth7396 who experience DD that have chronic disabilities with substantial functional limitations in three or more areas of major life activity.
These are things like self care, learning, mobility, capacity for independent living, economic self sufficiency, and others. These adults with DD who do not also meet the artificially narrow definition of intellectual disability in Massachusetts cannot access meaningful services to live fully productive lives in the community. They are left out. And while they may have access to a program, they are not always connected to an agency of Thai. For example, one of our citizen council members Cody Rooney, who also submitted a letter couldn't testify today. He's an adult who experiences cerebral palsy and does not meet the narrow IQ cutoff as defined by Massachusetts. He has limited access to services. But he would qualify for meaningful services in New Hampshire, our neighbor to the north,
Because the Granite State has a broader definition of DD. Definitions do matter. And adopting the federal definition is an inclusive policy approach that would enhance services to meet the needs of provide individualized services to adults with DD who do not meet the restrictive IQ cutoff. This is particularly important as we've heard today for individuals who have FASD, Fetal alcohol spectrum disorders, Cerebral palsy, Epilepsy, Angelman syndrome, and others. In doing so, these adults will be able to live more independently in the community and also be able to strive towards reaching their full potential. So the MDDC believes that this legislation will promote integration and inclusion of society of more people with ED, and we appreciate the opportunity to speak today. Any questions?
LIVINGSTONE - Yes. If this bill was to pass, do you know how many people would be covered that are not covered by DD Services today?
BERTRAND - That's a really good question. I don't have the numbers in front7530 of me, but I can do some digging and I can get back to the committee with that information. I don't know if maybe if Rick might have some numbers on that as well, but I can get back to you with that. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - I appreciate it. Any other questions? Well, thank you.
SPEAKER38 - Thank you.
SPEAKER1 - Next is June Birch.
SPEAKER34 - Hi. Sorry about that.
JEAN BERTSCHMANN - SPINA BIFIDA ASSOCIATION OF GREATER NEW ENGLAND INC - HB 207 - SB 103 - That's okay. I hope it's all the time. My name is Jean Bertschmann. I'm the executive director for the Spina Bifida Association of Greater New England and I want to thank the committee for the opportunity to be here today and add our voice to urge the adoption of an act relative to persons with disabilities, S.103 H.207. Spina Bifida is a common form of permanently disabling birth defect It occurs within the 1st 28 days of pregnancy when the spine does not fully close, leaving the nerves and spinal cord unprotected. Spina Bifida causes physical, intellectual, and developmental disabilities that range from mild to severe. Any impact of Spina Bifida will be lifelong and there is no cure. Spina Bifida is included in the list of related developmental disabilities for children in Massachusetts.
Yet access to disability services for adults is narrowed, and adults with Spina Bifida frequently lose services. For individuals living with a permanent disability, for which there is no cure, this is unsupportable. Adopting this act will support the Spina Bifida community in the following ways. First, continuing critical services provided to children with Spina Bifida as they transition to adulthood. Message visits offer some of the best Pediatric medical care and social and educational supports for children with Spina Bifida. improving health outcomes and increasing longevity. Conversely, In adulthood, qualified medical care is extremely difficult to find and disability services are reduced. When adequate disability services are not accessible, Parents and adults are left alone.
To piecemeal together, insurance, benefits, employment, transportation, housing, home modifications, and many more components of independence, integration, and inclusion. According to the CDC, only half of adults living with Spina Bifida Myelomeningocele are able to live independently as adults accruing substantial additional cost for care. Secondly, providing equity for adults with Spina Bifida to their peers and the other 47 states which already follow or more closely approximate the federal definition as well as equity to their peers in the Massachusetts. Disability community who do with similar needs and lived experiences who are provided with services. And finally facilitating increase independence and autonomy. With continuation of existing supports available to children with Spina Bifida.
Adults are eminently capable contributing to the economic and social fabric of our state. In closing, one of our7701 constituents has more eloquently summarized7703 the need than I can for the passage of these acts. My daughter was born with Spina Bifida 44 years ago. Spina Bifida often comes along with serious health issues and may include complex cognitive and learning disabilities. Families such as ours are often left to support their loved ones alone without any services or supports once their children age out of school services. This means that finding a meaningful life with access to employment, housing, and other critical supports is almost impossible. Having adults service agency like DDS would make a world7734 of difference for the many adults with Spina Bifida who are living in Massachusetts. Thank you so much for your time and attention, and we will also submit written testimony. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any questions? Thank you. Next, we have Barbara Italia, former state center, former state representative.
BARBARA L'ITALIEN - CONCERNED CITIZEN - 21 HB 207 - SB 103 - Thank you so much. So much has been said about this bill to expand, entree into the DDS system that I thought it might be a good idea to go back a little bit in terms of context and history. As many of you know, I have a son with autism spent my time in the house and senate advocating for autism, was able to open that very heavy door, almost a vault to get into DDS services, over a decade ago. At the same time, some advocacy from Charlie Murphy open it up for Prader-Willi because he heard about this from his constituents. A few years later, when the autism omnibus passed, Senator Mike Rush advocated successfully for Smith McGainas.
Great for all those people, but it shouldn't take individual of advocacy to get, you know, discrete, diagnoses accepted as being able to receive services from DDS. As was mentioned, there are 27 states that use the federal diet, definition we are still very much in IQ based, you know, service and IQ in no way reflects people's ability to maintain their themselves in activities of daily living. I was listening to someone earlier in talking about queuing and supervision, and I have one of those children new tests way above IQ. But cannot operate most things within my home despite numerous opportunities of being taught.
And so I just think we need to take a look at focusing on functional capability rather than IQ testing, making sure that these other groups are welcome as my colleague, Rick Glassman mentioned, people would still be subject to, regulation set up by DDS, but would at least have an opportunity, particularly if they have spent their young years, receiving services and investment from our state in the education process and others to be able to get off on the right foot at age 22 be able7883 to be met with success. And so I strongly urge that we reconsider. This is probably one of the most important bills that this committee could put forward, this session. I'd also like to mention spouses' caregivers, again, relevant history in the early 2000s.
We started something called care in homes, which opened up care two family members under the Medicaid reimbursed program to be able to help keep folks, aging in place We7911 did not allow for spouses. That was at the time because governor Romney felt that that was wrong and ran counter to the, the marital commitment. You know, our organization has been seeing the detrimental effects of workforce shortages, and we feel very strongly that there ought to be options for families to be paid as caregivers. Many are giving up their jobs to be able to care for their loved ones. And I think the time is now for the state to consider, amending our waivers, to be able to allow for this and I see everyone at a time. I'm happy to answer any questions for you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. I'd like to thank you for your history of the current definition of disability and for the DD, services was interesting. Are there any questions? Thank you.
L'ITALIEN - And could I just politely suggest that7966 in terms of wondering the numbers, I would think DBS would be able to give you those numbers in terms of how many people would be affected, with regard to those who as they age out of the, you know, child services are being, found to be not, eligible for service. So I think you could actually get that.
LIVINGSTONE - Yes. Yeah. We often ask, the government agencies for information, but often advocates who bring us bills understand the cost information that have gathered it already. So that's why I asked. But thank you. Great.
L'ITALIEN - And could I just say one more thing in terms of queuing and supervision, the ARC did a wonderful job about talking about the IDD population. I would just like to remind you that it's also helpful for elders who are forgetful, who might have early stage dementia or Alzheimer's. But that's incredibly important for disabled folks, but also for seniors. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER8 - Thank you. Thank s.
SPEAKER1 - Next, we're going to turn to house 216, 767, enact allowing spouses as caregivers. Do we have Chris Hope?
SPEAKER41 - Hello?
SPEAKER1 - Good afternoon.
HB 216 - SB 67 - Hello? I heard someone else speak.
CHRIS HOEH - PERSONAL CARE ATTENDANT WORKFORCE COUNCIL - HB 216 - SB 67 - So yes, my name's Chris Hoth. Thank chair, vice chair, and committee. I'm the vice chair8063 of the PCA Workforce Council, a consumer employer, who is able to live in my home because of the care of, personal care attendants. And you may have noticed or heard just recently they're a historic contract. We signed with the 1199 PCA union. And it is raising wages and at a number of historic improvements. And the whole purpose of which, is to improve the recruitment and retention of PCAs
. And the people who keep us out of institutions where we would shrivel and die, and this is really, we have a where we want the contract has improved the pay, but there's just such an extreme shortage of people who will work as caregivers. And there is a pool of people who are already doing the work or could do the work and those are spouses. And it's really a human rights issue, It's I would ask you to consider. Would you how what would your choice be if you have to choose between your an income for your family and caring for a loved 1. If you choose your income, then your family member won't have a caregiver, and they'll end up in a nursing home.
And you won't see them maybe ever again. That's the choice that's being placed before particularly low income families and caregivers. During the pandemic, MassHealth with, created a workaround to allow spouses to fulfill this work. And that should be continued. The legislation is important. MassHealth can make the change themselves now. And the other choice families have is you could also just get divorced. Which is what a number of people I know have done because then there's there8211 partner could be paid and wouldn't have to have these choices. This is just a simple solution to a problem that will hurt no one and helps masses of people. And I ask that we make that change. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you.
SPEAKER34 - Are there8233
SPEAKER1 - any questions?
SPEAKER24 - Thank you.
SPEAKER1 - Thank you for your testimony. And next,8237 we have,
REP O’DAY - HB 206 - HB 207 - Good afternoon. Thank you for hanging in there this late in the afternoon here today. I appreciate that. Afternoon, chair. Livingstone and chair Kennedy and honorable members of the committee. I'm here today to testify on two two bills, and I hope that I can take8262 the moment to do it on both. House 206 and house 207, 206, an act relative to queuing and supervision in the PCA program. And house 207 and act relative to persons with developmental disabilities, beginning with 206 and act relative securing and supervision the PCA programs. This is a bill that I've filed now for several sessions, and it really is a common sense approach to, utilizing the services of personal8296 care attendants.
But I think when most people think about the productivity of a PCA, it's more in line with folks that have more physical disabilities where they actually need assistance in in in moving and being mobile. But in this particular situation, it really is more around the idea of, again, maintaining, folks at home and not having them have to go into a nursing home or a skilled8326 nursing facility around things a little less complicated, like reminding an elder to actually eat. Right? People will go in the longer periods of times and not and remind and think about eating or, you know, turning the stove on and or off. So this really is an activity of prodding and gently reminding individuals about really daily activities that we8358 all would take for granted.
But for one reason or another, as a real as it relates to some flaw, that an individual is dealing with, whether it's memory, you know, a possible, traumatic brain injury or just being older. So, I think, again, this is a way of maintaining folks in their homes, and I don't think there's a lot of money associated8388 with this queuing It's not like something that has to be going on, you know, every hour or every day. So it can be handled on a more sporadic situation. So that's house 206. 2007 and act relative developmental disabilities Alarmingly Massachusetts definition of develop let me just halt for a second.
A number of years ago, particularly around the issue of autism, we expanded, our definition for disability. And at that time, there was a promise made to the disability community that the Commonwealth recognize that, you know, there were others that we need to be responsible to. And there was a promise made. I wish I could tell you the date I'd be making it up. But it's been since I've been here, which was, 2007. And since then, we have yet to actually broaden that definition. And that's essentially what this bill does. This bill would update, that definition to the federal definition.
Of individuals with8464 disabilities. Disabilities such as Fetal alcohol syndrome Cerebral palsy in William Syndrome. These are a handful of other disabilities that presently, we do not recognize. And I guess my question is since when did the federal governor become more progressive than the Commonwealth of Massachusetts. So, it is for that reason in others, obviously, that I hope, that this bill 207 and 206 can both be given, and I strongly8501 support both be given a favorable outcome by this illustrious committee. Thank you all for your time and your efforts and for hanging in there today. Thank s very much. Appreciate it. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you for your testimony. Any questions? Thank you.
SPEAKER42 - Thank you. Have a great day. Thank s so much.
SPEAKER1 - Next, online is Linda Andre Grady.
LINDA ANDRADE - MASSACHUSETTS COUNCIL FOR ADULT FOSTER CARE - HB 216 - SB 67 - Hi. Good8532 afternoon. I'm chair and distinguished members of the committee. On behalf of the Massachusetts Council For Adult Foster Care, the MCFC. We represent over 90% of the Adult foster care provider agencies on the Commonwealth. And over 12,500 seniors and adults with disabilities served by AFC living in their homes. I would I'm testifying to express support of house 216 senate 67 an act allowing spouses to service caregivers. Adult foster care is a MassHealth community based program8568 that provides in home care for individuals who are elderly or have a disability.
That in home care is provided by a live in caregiver who receives a daily stipend tax free. It's minimal. While most individuals in AFC meet an institutional level of care, keeping families intact and providing in home services has significant benefits to both the caregiver and the person they are caring for living at home in our communities. AFC is a critical piece of the Commonwealth's Community First Initiative. The benefits of AFC were highlighted during our pandemic. Many people vulnerable populations, including adult foster care families, and long term care facilities significant positive COVID rate compared to AFC people living at home with their caregivers.
We had about a 4.7% infection rate, and we know how high the infection rate was in our long term care facilities. So as with the majority of industries, AFC struggling with the workforce and identifying retaining the in home caregivers. I won't repeat what other folks have said. Thank you very much. Representative. Scanlon, Comerford, representative Orrall Senator Lovely, Great, great messages in support of this. I'm going to go right to the story. The story in March of 2018, an ASC agency met a family. It was a mark and his girlfriend, his girlfriend of 10 years, So Mark had recently been diagnosed with stage three cancerous brain tumor and was starting to require more help from his girlfriend, Beth. First personal care is girlfriend Beth of 10 years.
They were planning on being married, but here's the situation. Mark, they were encouraged to apply for AFC during the intake process needed to help Mark get on mass health. Then it was determined, well, you can beat an AFC, but sorry, you can't8695 get married. So long story short, they got married. We had to discharge them from the program. We still this program still had interactions with this family. There were over 50 interactions in a family in less than a year. Helping that family remain at home. So they were engaged. They got married. They were discharged, and Mark passed away less than a year later. So that's the story behind this. That's the critical reason to consider spouses as Can I give us, and we encourage the committee to both to spill out a committee? Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you for your testimony. Thank you. Any questions? Thank you. Next is Betsy Crimmins.8745
BETSEY CRIMMINS - MASS HOME CARE ASSOCIATION - HB 216 - SB 67 - Good afternoon, and thank you to the members of the joint committee on children, families, and persons with disabilities for the opportunity to testify in support8758 of S.67 and H.216 an act allowing spouses to serve as caregivers. My name is Betsey Crimmins, and I'm the executive director of the Mass Home Care Association, which is the nonprofit trade association for the 27 ASAPs or Aging Service Access Points in AAA's Area Agencies On Aging across Massachusetts. This network has been embedded in local communities for almost 50 years, providing the crucially important services and supports that older adults and Massachusetts need to continue to live safely in their homes and communities as they age.
Mass Home Care strongly supports this bill, which would authorize the executive office of health and human services to include spouses within the definition of family members for home and community based services funded through mass health. Massachusetts already recognizes as you've heard already, the immense value of family caregivers As some MassHealth programs, including adult foster care and personal care attendant programs, allow family members to service paid caregivers. However, spouses are not including the definition of a family caregiver. As a result, many individuals with disabilities are denied care from the person closest to them. Who needs whom they trust the most and who8834 provide the most stability and consistency in caregiving.
8838 For8838 a spouse who needs and why to provide care for paying spouses to provide care to their partners will help alleviate the financial burden these couples face while also helping more people live at home rather than in expensive institutional settings like nursing homes. Multiple studies have shown that caregiver spouses provide care for a longer duration than non spouses, which contributes to overall quality of care, more positive health outcomes and cost savings to mass health. Allowing spouses to service pay caregivers will also expand the number of caregivers we have at this time. Right now, our state nation are facing a historic widespread, significant8887 workforce shortage.
Which was greatly exacerbated by the pandemic and continues to challenge our ability to recruit and retain enough home care workers to meet the needs of older adults in persons with disabilities. This shortage has created waiting lists for crucially important in home services that allow people to remain living at8907 home and to stay out of the more8909 costly settings like hospitals or nursing homes. The most recent data from the executive office of Elder Affairs regarding wait list showed that 4,396 people who had been found eligible for in-home services, were waiting for provid4rs to be locates. Another 718, had located but we're still waiting for services to begin. And just to let you know, this rate can often be several months, and that can be the difference between being able to stay at home. Or ending up in a nursing home. As you know, the growth in our state's population. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Feel free to submit written testimony for anything else that you wanted to add. Does anyone else have any questions? Thank you. Next is, Joseph Tringali.
SPEAKER9 - Yes. Hello. Can you hear me?
SPEAKER1 - Yes.
JOSEPH TRINGALI - STAVROS CENTER FOR INDEPENDENT LIVING - HB 216 - SB 67 - Hi. Thank s for hearing my testimony. But I want to stay committee members and others. I'm testifying on behalf of Stavros CIL and many people affected by Regulations S.67, which precludes spouses for being paid as personal care attendants or PCAs. The regulation is problematic in many ways. To my mind, the most important is that it9001 makes the Supreme Court mandate the Olmstead Act to keep people with disabilities in the least restrictive environment, almost impossible to accomplish. Black of the appropriate care can quickly tip the scales from someone being able to live at home to needing to enter a nursing home at a much larger cost than remaining at home.
Finding PCAs that are capable, dependable, and willing to work has always been a challenge, but never more so than now, as you've heard before, who better to be employed to help an individual to stay in their home than the person who shares their home? Knows their needs better9042 than almost anyone else and9044 has a strong investment in9046 providing the best possible care for that individual. The reality is that today, many spouses are trying to balance a job outside the home with providing care for their spouse. As no one else is available, we're willing to do the job. Oftentimes, a spouse, they quit there outside John to ride gear. It makes it necessary for families to survive on one income. Or possibly no income if the person with the disability is unable to work outside the home.
In today's world, there there's that is a true challenge. Add to the vulnerability of people with disabilities9087 to COVID exposure and the possible9091 serious effects of such an exposure, bringing anyone else into your home to provide personal care to be very daunting. Other family members can be paid to provide care. Why not a spouse? Who better than that? No one has a deeper commitment to making sure. A person is well taken care of. Why9113 not compensate the spouse for job? Anyone else would be paid to do? That's my test testimony, and I would just like to add that, as far as the killing and supervision, it's allowed on the federal level. Don't understand why it's not allowed on a on a stay level. Thank you for listening to9136 my testimony. Have a good afternoon. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions? Thank you for your testimony. Next, we have Kristin Koch.
KRISTIN KOCH - BOSTON CENTER FOR INDEPENDENT LIVING - HB 216 - SB 67 - Thank you for holding this hearing today. I'm here to express my strong support for the legislation that would allow9157 PCAs spouses to become paid PCAs. For those of you who can't see me, I'd like to identify as a person with a disability. I used a power wheelchair since I became paralyzed in an accident when I was in high school. My testimony today comes from several different perspectives. My decades of personal lived experience, my 25 year professional career and disability services, and public health. In my involvement with multiple nonprofit agencies that support people with severe disabilities.
I'm currently the City of Boston Disability Commissioner I'm also on the PCA workforce council appointed by the governor. I'm here today to speak on behalf of the Boston Center for Independent Living. A main local consumer driven agency that oversees the PCA program in Boston. BCIL fully supports this legislation. I'm a long term BCIL consumer and have been on the PCA program for almost 40 years. During which time, I've hire hired 100 of PCAs. And under the current program, spouses are the only people who are not allowed to be eligible paid PCAs. This seems arbitrary and unfair, and I feel very strongly that should be changed. When I worked as a peer mentor at SCI Boston, a local nonprofit that supports people responding to injuries.
My role was to9232 help newly injured people who had just become paralyzed, get home. The these injuries are devastating in every way, physically, emotionally, and financially. My role was to get them ready to go home, which included setting up PCAs. This in itself is a long and complicated process. Hospitals are decreasing the length of stay, so people need to get ready to go home in only a few weeks. This doesn't allow enough time to set up PCAs. And if9258 they don't have PCAs, many people must go to nursing homes or long term care facilities. To avoid going to nursing homes, there were many times I saw spouses of millions of people with their jobs to become the primary care provider of the newly injured spouse.
This was financially devastating to their families and could be easily solved by the passage of this legislation. Finally, I want to speak about my own lived experience. I sustained a spinal cord injury when I was in high school. I became paralyzed from the chest down. I needed hours of Kia every day. I was approved for MassHealth and got on the PCA program where I began hiring my own years. Eventually, after college,9296 I moved in with my future husband. This was my first time living on my own without9300 support from my nuclear family. I found myself struggling to be independent with PCAs calling in sick and not being able to provide coverage for all my shifts. My fee my fiancée was working full time plus a part time job on evenings and weekends at a deli.
After months of struggle, we decided to have him give up the second job and do my care nights weekends. This allowed us to stay afloat financially and keep myself healthy, at the same time. This works so well that we delayed getting married for over five years. When we did finally get married, I immediately had to take him off the PCA payroll and it's been a struggle ever since. Throughout the years, we've had more than one serious conversation about either getting divorced or exploring long term care facilities. Because he has to work to provide income for our family, and he can't work as a PCA. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you for your testimony. Are there any questions? Thank you. Next is Brianna Zimmerman. Oh, sorry. Kristen Makasha, are you still there? Apparently Yes. Yes. Any members had a question. Representative. Doherty had a question for you.
REP DOHERTY - No. I just want to make a comment to all of those who have testified in support of this bill. We heretofore as a society, expect their loved ones, will be the caretakers endlessly for people that they love who need their assistance. Without considering what it is that they have to relinquish in order to provide that excellent care. And so I think that this bill is right headed. And, well, I guess if it passes out, favorably, I'll support it. I don't know if I'm supposed to say that, but thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER44 - Thank you very much for your support.
SPEAKER1 - Thank you, representative. Daugherty, for your speech. Next is Albert Norman.
SPEAKER46 - Yes. Good afternoon. Members of the committee, for the record party.
SPEAKER1 - I recognize I I had called Brianna's room, and then the question for me. So sorry. Brianna first and then Albert next.
SPEAKER47 - No worries. Series.
BRIANNA ZIMMERMAN - STAVROS CENTER FOR INDEPENDENT LIVING - HB 216 - SB 67 - Thank you. Chairs Kennedy and Livingstone and members of the committee for the opportunity to testify virtually in support of H.216 and S.67 and act allowing spouses to serve as caregivers. My name is Brianna Zimmerman. I'm a resident South Hadley, and I'm also here today to represent Stavros Center for Independent Living. We serve the disability community in Hampshire Hampton, Franklin Counties of Western Mass. For people with disabilities and older adults across the state, home and community based services are vital to ensuring that we can remain in our communities rather than confined to institutions.
These services allow people with disabilities to choose their caregivers and be in control of the care they that they receive. This is a stark contrast to the experience. That most people with disabilities have9491 an institution such as nursing homes where people are told when they will eat, use the bathroom, bathe, visit with loved ones, go outside, or engage in9499 social or recreational activities. I wish it was an exaggeration, but as someone who has been to many nursing homes, visited many nursing homes personally and professionally. It's a terrible reality. Nursing home residents are also susceptible to neglect abuse and infectious disease such as9517 COVID 19. Additionally, institutionalization is more financially costly than home and community based services.
In many instances, people with disabilities can9527 live independently when given proper home9529 and community based services and supports. At Stavros, we're9533 often approached people with disabilities and their loved ones who9536 have difficulties hiring long term paid caregivers. Many are desperate to allow spouses to be their paid caregivers. In recent years, we've been experiencing a dire shortage of PCAs resulting in a9549 full blown crisis for people with disabilities who need services. There's a high turnover rate of PCAs, and it's extremely difficult to find a long term caregiver that can really be trusted to enter people's homes and deal with the most9563 personal aspects of daily living such as toileting, grooming, bathing, dressing, and eating.
This is why9569 so many people disabilities9570 opt to have their loved ones such as family members, friends, and9574 partners be their paid caregivers. I think many of us would choose the same for ourselves and for our loved ones. There are 15 states currently that allows spouses to be, serve as paid caregivers, but in Massachusetts, spouses as well as legal guardians are unable to be paid caregivers, meaning the care that they will inevitably end up providing goes totally uncompensated. This bill authorizes spouses to be cert to actually be paid givers and the MassHealth programs, for certain home and home based care and services. And, Stavros and myself, really urge you to vote H 216 and S67 favorably out of committee. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you, and thank you for your testimony. Any questions? Thank you. Next, Albert Norman.
AL NORMAN - MASS HOME CARE - HB 216 - SB 67 - Yes. Members of the committee. My name is Al Norman for 32 years. I was the executive director of Mass Home Care. And I have a spouse's caregiver story I want to share with you. I'm, spoke with a woman named Joyce Galloway, who told me this story when she was 73 years old living in Quincy Mass. She said in 1985, I married William Dicey Galloway, who was performing in a singing group called the heart tones. Their song, life as but a dream was on the charts. But for Dice, his life was not a dream. He was a Korean war veteran. And when I married him, Dicey had epilepsy and asthma.
He could care for himself, but I had to be on the alert for his seizures, which are absolutely terrible. Dicey worked at the time as a bagger at Shaw's Supermarket by 2012, at the age of 78, Dicey developed kidney failure and started dialysis three times a week. It was around this time in 2012 that I first heard about the VA program known as the program of comprehensive assistance for family caregivers. This program allowed me to be paid for care for Dicey. We waited for about 15 months to get into this program in9706 October of 2013. The hospital took him off dialysis, sent him to a nursing home to die. They said he wouldn't live through it, but he did.
In February of 2013, he came home, and this is9719 when he really needed my caregiving help. We got into the VA caregiver program. I helped Dicey get dressed, bathed in the areas9728 he couldn't reach. I helped him with9730 32 pills a day. I9732 cooked all the meals. I did all the shopping, made all the appointments, I helped him deal with asthma, anemia, COPD, glaucoma, pulmonary embolism, and osteoporosis. On some days, Dicey needed the wheel wheelchair. He's approved now for 17 a half hours per week of care. He falls a lot. He had seizures that lasted 13 days. He went into rehab and came home. He had to learn to walk all over again. I get paid $20 an hour. Taxes are taken out of it. It's around $12,423 net per year. Allowing a spouse to be a caregiver means much9774 more makes much more sense than having a stranger do it.
9778 I9778 was doing elder care in people's homes for a few years. A lot of my clients were very nice, but there were many who resented a stranger coming in. Dicey wouldn't like it having a stranger come in. He just didn't like the idea of outside people coming in. I don't have the slightest idea of what we would do if I couldn't be his caregiver, this program has been a godsend for both of us. Joyce Galloway and her husband would never have been he would have been a patient in a nursing home if it wasn't for his spouse caregiving for him. It cost to mess health with his spouse caregiver would have been in a nursing home would have been nine times as much. This program, our deal, spent years, has been offered at the VA. The committee to pass this9826 as soon as possible. Thank you so much.9828 SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you for your testimony. Any questions? Thank you. Next is Christo Palamas.
SPEAKER41 - Hello? Hello?
CHRIS PALAMES - BOSTON CENTER FOR INDEPENDENT LIVING - HB 216 - SB 67 - Thank you, Chair Livingston and Kennedy, and members of the committee. Some friends on this, testimony. I was an original incorporator of the Boston Center for Independent Living. Back in, when the PCA program began in 1974, founder of Stavros Foundation, friends there. I am now, 76 years old. I'm 16 years beyond life expectancy for my level of ability at my age of a mindset. My wife, Judy, is a retired respiratory therapist the two of us are economically holding on by our fingernails so that, Judy, who was seriously injured a few years ago.
Shattering her left uh-uh tibial plateau, which has been surgically repaired with steel plate and nine screws. Works at a local orchard lifting a bushel boxes of apple and pears and large pumpkins on a shoulder, which has a torn rotator cuff. While I have or try to have personal assistance come in and provide assistance toileting and other things I need, while Judy is out of the house. This does not make any sense. I've had a couple of fabulous personal assistants9944 over the years. I cannot keep them. Other opportunities come along for them. The pay rate for PCA9954 simply does not let us9956 maintain with any consistency. The people who are able to come into the home and this very subtle and sophisticated, you know, process of fitting into that into the household.
So, this is where we are at. Judy and I, well, some years ago, I worked for the Commonwealth and I would go up to the room where we would cash our paycheck. And there was a sign on the wall that said, parents live long enough to become a burden to your children. Judy and I have been trying very hard not to do that. To maintain our home, to maintain our household, not to become either a burden or children, and to continue making some contribution to our community. You know, spousal caregiving would just give us a lifeline that would make so much more sense. Reduce the level of exhaustion and strain in our household. And, you know, to save me a single skin breakdown, would more than pay for several years of the Commonwealth actually providing for spousal here. Thank you.10033 Please support the bill. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Thank you. Thank you for all your work and forming all agencies that have to have representatives testify today. Any questions? Okay. Next is Lady Titus Some men.
LAINEY TITUS SAMANT - ALZHEIMER'S ASSOCIATION - HB 216 - SB 67 - Thank you, Mr. chairman, Chair Kennedy and members of the committee. I appreciate the opportunity to testify today. My name is Lainey Titus Samant, and I'm the public policy and10062 advocacy manager for the Alzheimer's Association Massachusetts chapter. I'm here to speak today on behalf of the 130,000 individuals living with Alzheimer's in Massachusetts who rely heavily on their over 200,000 family caregivers. The Alzheimer's Association supports an act allowing spouses to service caregivers, and we're grateful to10082 Senator Comerford representative Scanlon and Representative Orrall for their leadership on this bill. As to evaluate the bill, ask that you consider the unique challenges and needs of both family caregivers and those living with dementia.
The nature of Alzheimer's and dementias unlike many other diseases. Individuals with Alzheimer's often require around the clock care and monitoring 24 hours a day, 365 days a year. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional financial and physical difficulties. Last year, Massachusetts caregivers of people with Alzheimer's or other dementias provided more than 300,000,000 hours of unpaid care with an estimated economic value of over $7,000,000,000. Caregiving can have a large impact and the ability of the caregiver to remain in the workforce as others have mentioned and also remain financially secure. Research shows that many caregivers need to reduce working hours or stop working entirely.
When they're caring for a loved one with dementia. Family caregivers are often under financial stress due in part to these disruptions and employment, as well as the cost of health care or other services for themselves and their family members. On average, our families pay over $10,000 annually and out of pocket costs. Allowing spouses to service pay caregivers would provide some direct assistance so they can offset a small portion of the financial burden of caregivers. Providing care for loved one at home is the preference of the individual living with the disease and their family. And again, as others have mentioned, receiving here at home is also a cost savings to the Commonwealth and research shows that supported caregivers can reduce health care costs.
By delaying use of long term care, which is incredibly expensive. Massachusetts is missing an opportunity to further support families and reduce costs. Spouses are often those who are providing the care and know the person best. Massachusetts should follow other states and expand these paid family caregiver programs' spouses, therefore, providing more options to receive care from your loved ones at home. In act allowing spouses to service caregivers will provide concrete help to families in need and potentially delay costly long term care. We urge the committee to give a favorable report to the bill to show that the Commonwealth is committed to supporting family caregivers of those living with Alzheimer's in dementia. Thank you for the opportunity10226 to SHOW NON-ESSENTIAL DIALOGUE
provide comments and you’re your work on behalf of our constituents.
SPEAKER1 - any questions? Thank you for your testimony.
SPEAKER44 - Thank you.
SPEAKER1 - Next is Mary Heinz.
MARY HEINZ - DEPARTMENT OF CHILDREN AND FAMILIES - HB 216 - SB 67 - Thank you. I was10257 a foster parent many years ago, I've been involved in advocacy for over three decades. I've served on the board of the current and former Mass State Wide Foster Parent Associations for over 30 years. I also worked professionally at MSPCC and as a statewide, foster care manager for DCF. We adopted our son from DCF Foster Care and DSS when he was10281 four years old. I'm a very proud mom who's son is in the10285 army just came back from Lithuania supporting Ukrainian, training for, equipment we're sending over there. I'm here because, I need to support this legislation because as a former foster parent, professional and volunteer advocate, and DCF employee.
I have seen year after year how difficult this system is. Judges constantly sent children home to unsafe safe situations. Social work social workers ignore red flags and reunify families with dangerous and neglectful and abusive situations. Lawyers never even meet regularly10322 with children they represent, hearings and court procedures get postponed year after year, and the children pay the price. Foster parent concerns getting ignored and dismissed even though they are the 20 four seven caregivers and observers of the news of the youth. They are often retaliated against when they oppose DCF staff and frequently are treated with disrespect and irritation when advocating for kids and their care.
I've seen numerous Blue Ribbon commissions, task forces, work groups, etcetera that are supposed to improve the system but little gets done to avoid support and collaboration that demonstrate a professional relationship10360 between staff and10362 foster parents. Sorry. Arduous efforts to provide more reasonable10370 policies and practices have10372 been made for decades, at least as long as I10374 been involved over 30 years. Both the previous and current foster parent associations and other advocacy groups Have constantly voiced concerns and made recommendations. We need DCF accountability that reaches somewhere beyond own monitoring and third party oversight.
I would like to say in the beginning, I'm in favor of the union bill, by the way. I know it's not a panacea, but We've been trying everything else for10401 years. I just am desperate to have somebody try something like this. Unfortunately, DCF often makes few changes even when faced with egregious situations and issues. There are major people at DCF, but the challenges at foster care in this space dealing with incompetent, inconsistent, and often contradictory practices usually overwhelming terribly painful and disheartening. Up for themselves and not have to advocate with you folks every single year to get, precedent in our rate and other, services. Thank you. Thank you for your testimony. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - And the only other person that has signed up today as testified did is Henry Bobby. He's not here. Has anyone else signed up to testify today? Okay. For that, I moved to Close there. Thank you for your adjustment.
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