Enewsletter 23-Apr-2008

RE: Waiting List for Services (Adults with Special-Needs)

Mr. Chainnan, I believe that one of the most painful situations we face as elected officials in Pennsylvania is watching families who struggle to care at home for an adult child with specialneeds.The plight of these special families does not appear on the front page of any newspaper,but to these families, this issue is vitally important. These families are to be commended for caring for their adult special-needs children - themselves - at home, and I think that those of us who serve in state government should examine ways to make their jobs a little easier. Simply stated, the state resources that we dedicate to caring for the adult members of our families who have special-needs are not ample and need to be increased further then they havebeen in the preliminary budget. According to the Department of Public Welfare, a total of

21,475 adults with mental retardation are currently on the waiting list for help. These special members of our families come from every community in the Commonwealth. Governor Rendell's proposed budget designates $28.8 million to reduce that waiting list by 1,818 individuals for Fiscal Year 2008-2009. This funding is much appreciated and badly needed - however, I believe we cannot turn our backs on the thousands of Pennsylvanians whowould not be helped in this scenario. With that in mind and on behalf of these families and all special-needs Pennsylvanians, I respectfullv request that the committee see fit to providesupplemental funding so that even more families who eare at home for an adult with special-needs can get the helping hand they so desperately need.

Mr. Chainnan, I strongly encourage the continued support of the 800 special-needs students graduating from high school each year by making this allocation a permanent line item in the budget. I add that providing support for special-needs adults at high school graduation prevents regression, and maintains vital connections to community, while empowering parents to continue working to support the household. This action also severs the waiting list at the source. Mr. Chainnan, state law requires that up until 21 years of age, special-needs children with an I.E.P. be educated in public schools or in another appropriate setting. Once these special members of our families leave the public school system, however, they and the families who lovingly care for them are frequently left to navigate an under·funded system that requires them to wait for services for their adult child who has special-needs. Additionally, after these special needs children leave school, many do not have opportwrities either socially, educationally, or with suitable employment due to a lack of funding and programming. Many of these special needs members of our communities must stay at home and are under-stimulated and sometimes develop even more health, emotional, and other mental health problems due to a lack of services. Some special needs adults will only be given a.housing placement outside their parent's home if their parent-caregiver dies.

Mr. Chainnan, one very serious condition that has evolved in Pennsylvania is where parents who

have worked hard for many years to care for their special-needs adult child at home, start to experience serious age-related health problems themselves. In these heartbreaking cases, in addition to having to care for themselves and worry about their own healthcare, these older parents must also continue to care for an adult special-needs child. Many of these families have parents who are in their 80s, and an adult child with special-needs who is in their 60s or older. Needless to say, these special-needs adults start to experience their own heal1hchallenges relating to age or years of under-stimulation. Providing supports to aging caregivers and older adults with mental retardation are of the utmost importance. Many aging parents simply can no longer provide care for their special-needs sons and daughters living at home and they need relief. The challenges of caring for a loved one with special-needs at home are already painful and the aging process exacerbates these challenges even more.

Mr. Chairman, I am not pressing the panic button, but if the waiting list issue is not addressed in

the near future, these adults with special-needs could very well end up in other systems within the state such as state hospitals or even in the corrections system. This would be much more costly to the state than taking action now, and certainly much less prudent. Supporting our most vulnerable citizens is a core function of our government and should be a top priority for us. Thousands of Pennsylvanians and their families anxiously await the supports they need to be healthy and productive citizens in their communities.

Mr. Chainnan, as you well know - this issue is quite complicated and requires much effort in order to simply understand its magnitude. Essentially, I am requesting you to reconsider the budgeted amounts and to appropriate even more badly needed and deserved funding for adults with special-needs and the families who care for them.

Mr. Chairman, I end my testimony with my favorite quote by former Vice President Hubert H. Humphrey. You might be curious about why a Republican would quote what is sometimes called the liberal mantra, but the message is not about partisan politics here, and is clearly one of compassion, empathy, and concern for others. Vice President Humphrey said "The moral test of government is how that government treats those in the dawn of life - our children; those in the twilight of life - our elderly; and those in the shadows of life - our sick, our needy and our handicapped ."

Mr. Chairman, I want to be able to say that all of us passed that moral test, so I respectfully request your re-consideration of the preliminary budgeted amount for funding for our Mental Retardation Waiting List for Services.

Thank you Mr. Chairman and thank you to the members of the committee.