On Feb. 27 and 28, parents and their children with developmental disabilities made a trip to the State House to advocate for themselves both informally (dropping in on legislators’ offices) and formally (testifying before the Legislature’s Joint Ways & Means Committee). The response was promising, during both the drop-ins and the Ways & Means Committee hearing. The latter event couldn't have gone smoother. The Arc advocates testified early - with full color posters behind them punctuating the needs of our constituents - and left an impression.
Following the testimony of Joy Gosselin – who is turning 22 this October and will be in need of Turning 22 services – Committee Chairman Steven C. Panagiotakos responded with an impassioned speech about his close friend whose family member has developmental disabilities. He indicated that he truly “gets it” and appreciates the need to adequately fund DMR. Those that ventured to the State House - including Patricia Feeley (see her testimony below) and her son Michael, Gwen Gosselin and her daughter Joy, Janet Rico, Cindy Dyman, Linda Cournoyer, Cindy Howard, Edwina and Richard Spillane and their son Rich, Jennifer O’Leary and her son Connor, Susan Wilkins and her son Matthew, Leslie Lockhart and George Smith – brought those stories to life.
Arc Exec. Dir. Leo Sarkissian's Testimony
My name is Leo Sarkissian and I am the executive director of The Arc of Massachusetts. The Arc was established in 1954 by families across the Commonwealth to assist themselves and each other in finding and developing the basic opportunities for their children: a classroom, connections to community, and as they grew older to have jobs or other meaningful daily pursuits in addition to assistance in living in their community. Just as those mothers and sometimes fathers joined together in living rooms and then halls, we remain joined and determined over 50 years later, to obtain the services many in Massachusetts wait for. The Arc of Massachusetts is not a service provider, but an advocate that always has relied on the legislature for leadership. We represent 180,000 people and families throughout the Commonwealth, many of whom require us to be their voice.
With me today are some families and friends. They are here because they are the real deal—the line items and needs and dreams we testify upon, they live on a daily basis. There is no one disability type or need. The individuals here represent the hundreds waiting for residential services, the 607 students turning 22, the almost 3000 waiting for family support and the community providers with 15,000 plus employees who appreciate the salary reserve but have seen health benefit premiums rise in double digits along with increases in their other costs. DMR’s budget provides for a number of subgroups with different needs among its 33,000 plus caseload.
We implore you to appropriate dollars to allow growth beyond 1.8% in the DMR budget to address community service needs. Yes there are some new dollars for Turning 22 and Salary Reserve in the Governor’s budget. In the case of T22 however as these students graduate, the dollars do not follow them from LEA (local school district) and DOE. Instead a smaller portion is allocated for adult services consequently as each graduating class (440 in 1999 to 607 in 2009), has grown it has been difficult to maintain employment and some type of social or home support services for the students.
As we talk today there is a young man of 29 years, (not fortunate in his T22 lottery several years ago) who wakes up in the living room of his mother’s apartment - the only room big enough to handle his bed. His mother and sometimes a PCA, but usually just his mother, helps him get ready and a wheelchair van picks him up to go to his day program even though he wishes he was employed. He loves his mother, but he also wishes he was around people his age more.
EOHHS received 5.4% this year but real new dollars in DMR budget hovers under 2% and a large portion of that (which we don’t begrudge) is specifically allocated for contract increases in state operated institutions and other state personnel.
What would help?
We are asking for the following line items that directly address community needs--
1. Strengthen existing services for individual now served:
• Residential Rate Initiative (5920-2006) $10 Million is what we requested but even $2 Million in a difficult year would give a strong message of support.
The Romney Administration approved a new rate system to replace an outdated system and address underfunded residential services. However, just $2 million of a 3-year $30 million request has been funded.
• Salary Reserve (4000-0117) We ask you to maintain this line item.
Community-based direct care providers earn an average salary less than $12/hour, which leads to high turnover and uneven quality. The governor has recommended $23 million in salary reserve, which is key to ensuring that the over 10,000 FTE staff funded by DMR are compensated properly for very difficult work.
• Turning 22 (5920-5000) $10.6 M with full annualization
More than 600 DMR-funded students will have to make the challenging transition in 2009 from school-life to adult life. They will need $10.6 million with annualization ($21.6M) to be properly provided with the necessary job training, day services and transportation for the transition to be successful. This request includes $3 million in employment services, which would, for the first time since 2001, give about 200 students a chance at a job.
2. Give access to adults in need of services:
• Community Residential (5920-2000) Although asking for $5.5 M to address cut and support wait list, $2.5 M in a difficult year would send a hopeful sign to those waiting.
About 11,000 people are served through this account. The waiting list is 600 and growing, but the Governor’s budget includes a cut of ½ million dollars. Increasing funding by $5,543,000 (for a total of $574,504,000) would restore the cuts and begin to bring down the waiting list.
• Family Support (5920-3000) $3 M is requested. This cost effective program will reach many people - we would appreciate what you could do.
Perhaps the most cost-effective of DMR’s programs, there remains a 3,000-person waiting list for family support services. The account has received only one increase of $500,000 in the last 7 years. An investment of $3 million dollars (for a total of $58,044,228) would go a long way, cutting the waiting list in half.
3. Give access to children and families in need of services:
• Autism Division Services (5920-3010) $2 M is requested, we would appreciate what you could do here.
There is a growing population of children with autism, but the autism waiver currently assists fewer than 100 students. Early help in their homes will give them the chance to have productive lives in their communities as teens and adults. A $2 million increase (for a total of $5,277,672) would give autistic children the social, behavioral and communication services they need.
• DOE/DMR Program (5948-0012) $1 Million to address a wait list which if unattended will result in more residential school placements.
Allowing children to stay with their families rather than being sent to expensive schools will save the Commonwealth money, and this program does just that. Increasing the Governor’s budget by $1 million (for a total of $9 million) will address the 2-year waiting list and prevent the separation of children from their families.
I just would like to note before the panel why closure of state institutions and shifting from nursing homes for persons with disabilities to community care is an important part of our platform. The NCSL (Nat’l Council of State Legislatures) reported in 2003 that maintaining institutional and community systems are fiscally untenable. We support the Patrick administration in its Community First initiative which is historic as it begins to shift the historic bias in favor of skilled nursing facilities to community care for elders and cross disability populations. This is a step supported by the legislature in the past. This initiative mirrors what we have been doing for some time in the area of DMR funded services.
However if closure of schools doesn’t accompany this shift on the DMR side, we will continue to lose ground in maintaining quality and addressing needs of the unserved. What the NCSL has stated bears true in the Gov’s budget this year and last. We have growing needs in the community to address rates (at least 42% reimbursement by federal Medicaid clear this up). In the “2005 Edition of the State of the State in Developmental Disabilities”, David Braddock and others report that the longevity of persons with ID and DD means more capacity is needed in community services. But in Massachusetts, here are the stark facts looking at the time period of 2006-2009. The State Institution budget has grown $22 Million inclusive of the 2009-H2 request of Governor (base of 166 Million) while the census has declined. The Community services (non-state provided) budget grew $95 Million (base of $780 Million). But instead of a decline this includes approximately 3000 new individuals entering community services inclusive of Turning 22, children with autism, some new persons receiving family support and persons transitioning from nursing home and institutions.
Our institutional system experienced a 13.39% in growth with a declining in census as compared to to an increase of 12.21% with growth of 3000 people. There is something wrong with this picture. Please either fund the systems similarly or combine allocation of new dollars with dollars obtained through systemic reform. I’m proud of living in Massachusetts with the support system that our legislature tries to maintain and strengthen. Underline Let’s work to give all our citizens with intellectual and developmental disabilities their opportunity in Massachusetts.
A Closer Look
Overview:
• Community Services have not received a cost of living increase since 1987. A report at EOHHS (search on mass.gov for “financial health of providers in the Mass. human service system”) cites problems in purchase of services funding.
• There are unacceptable waiting lists for services: Community Residential (600 people), Employment (360+people ) and Family Support (3,000 families) services. These waiting lists should not be allowed to grow. The Community Residential account, which serves about 11,000 people, includes a ½??? million dollar cut.
• According to DMR, there will be 607 students in need of Turning 22 services for 2009, an increase from this year, but the Governor’s budget includes a $1.6 million cut.
• The DOE-DMR program, which helps students stay with their families rather than being sent to costly schools, has a 2-year wait list and has not had a funding increase in more than 3 years.
Three of Many True Massachusetts Stories Illustrating the Implications of Budget Cuts
Janet S. has worked in a community residence outside Boston for the past 3 years. During that time, her health insurance premium has increased at least 8% per year, or $172/year in her share of premium cost. She has gotten yearly raises through the state’s salary reserve, but it has translated into just $570/year before taxes. After taxes, she is left with just $3 more a week in take home pay. Meanwhile the agency she works for is having to make staffing reductions at the residence because of its increased health premiums, gasoline and heating costs. Ultimately, Janet is having to work harder than ever without being compensated for it. How long can she last? Janet S. is counting on the Legislature to fully fund the Salary Reserve (4000-0117) and Residential Rate Initiative (5920-2006).
Twenty-nine-year-old Josh S. lives with his mother in the Brockton area. His mother, a single parent, had to leave her job three years ago to take care of Josh, whose health was declining. With no employment income, Josh’s mom can’t afford to fix the family van, leaving Josh without a way to socialize outside his home. He wants to live with peers but the wait list for residential services is more than 600 and Josh is not at the top of that list. Josh’s case manager has told them that they are lucky to have some services. Still, Josh and his mother don’t feel lucky. Josh and his mom are counting on the Legislature to fully fund Community Residential (5920-2000) programs so Josh can have housing, a social life and other support services.
Evan D., an 11-year-old with an autism spectrum disorder, lives with his parents and three siblings in Reading. His autism requires that his parents supervise Evan 24/7. With the right in-home supports, Evan could learn to manage some of his difficult behaviors, dress himself and play with other kids in a community recreation program. However, without such support, Evan may end up in a residential school potentially far from his family and community. Evan and his family are counting on the Legislature to fully fund DOE/DMR Program (5948-0012) so he can get the social, behavioral and communication supports he needs and remain with his parents and siblings.
(This testimony was not given in its entirety because of time constraints)
Patricia Feeley's Testimony
My son Michael turns twenty-two on March 14, 2008. At that time he begins his transition to the adult service system in Massachusetts. On that day the entitlement to special education and its services comes to an abrupt end. His story (and mine since I’m his sole caregiver) reflects the fact that the level of funding has not kept up with the numbers of students graduating each year. This year more than 600 students in Massachusetts will be turning 22. Typically most of these students will NOT receive adequate funding for needed services.
For Michael this is a harsh reality. Transition planning should begin years before graduation with the development of an Individualized Transition Plan. For Michael the result has been that the Massachusetts Department of Mental Retardation has been reluctant to help write a transition plan which adequately reflects Michael's needs since they feel the plan would be a commitment to provide services when they lack the funding to provide the services he needs and requires on a daily basis.
Michael has autism, mental retardation, OCD, and diabetes. He is nonverbal and communicates using gestures, a few signs, or pointing to desired objects or familiar Mayer-Johnson icons (simple line drawings.) He requires assistance and supervision with all activities of daily living that most of us take for granted; communication and safety remain areas of concern for him.
Some examples of what I do for Michael on a daily basis include assisting him with toileting, bathing, grooming, dressing, meals, communication, making choices, being aware of safety concerns, planning adequate exercise, scheduling and accompanying Michael to appointments, and essentially performing nursing duties of monitoring and managing his diabetes.
According to DMRs own assessments Michael is eligible for residential placement due to the level of daily living support, medical support, and supervision he requires, yet DMR is reluctant to discuss unmet needs and the status of their waiting list for services.
So Michael's story reflects a number of line items that I, other families and The Arc hope the legislature will fund this year:
1. Turning 22 which will help him get the day and transportation services he needs. Even if T22 is fully funded Michael probably will NOT get residential services but hopefully his transportation and day program would be assured and include some in-home support.
2. The family support/respite line item so Michael will be able to receive care in a respite center or if I'm unable to get residential so I'll have some respite from caregiving—a number of the respite centers say they can't serve Michael because of his diabetes; whereas centers that address diabetes won't serve him because of his intellectual disabilities. It's not that DMR doesn't have places that provide medical supports, there just aren't enough of them in the community!
3. Finally the community residential line item since if Michael does NOT get residential services at age 22 (which seems likely) we could hope that he could get prioritized among the hundreds of adults waiting to receive some type of residential support in the community.
Individuals with cognitive and intellectual disabilities generally have the same desires as the rest of us, they just need more support. So I plead with you panel members that you will help us get the support that Michael and others need—to assist and care for our most vulnerable citizens?
(This testimony was not given in its entirety because of time constraints)