The Arc of Pennsylvania is outraged that the General Assembly passed a budget that further deteriorates the community support system for Pennsylvanians with intellectual and developmental disabilities. Following on the heels of the prolonged budget impasse that left the disability system reeling financially, the 2016-2017 budget phenomenally fails to address serious issues that threaten to throw Pennsylvanians with disabilities back into segregated institutions.
The Arc of Pennsylvania and its chapters have met with hundreds of legislators and the Governor to explain what is happening to the disability supports system in Pennsylvania, but in light of the expected final 2016-2017 state budget it appears that the urgency of these issues has been lost on our elected officials and bears repeating: Pennsylvanians with intellectual and developmental disabilities are suffering, not because of their disabilities but because our state is choosing to not make the investments and changes needed to support these citizens.
Families in Pennsylvania dread the 21st birthday of their children who have an intellectual or developmental disability, because that is when vital community support services come to a complete halt. A select few families who have the means and resources to continually advocate are able to secure services that let their young adult live and work in the community; the other unlucky Pennsylvanians are put onto the disability waiting list to wait years for the services they need. Some parents have to quit or lessen their work, decreasing their family income to care for their child while waiting for services; this puts Pennsylvania families at risk for needing cash assistance and food stamps as well as experiencing housing instability.
Other families have been able to support their loved one who has a disability at home for years and come to a crisis point because of a parent's illness or because a parent simply becomes too old to care for their adult child at home. Pennsylvania has nearly 5,000 citizens on the emergency waiting list for disability services because of situations like this.
Pennsylvania families have, over the decades, saved the state billions of dollars by refusing to put their loved ones in costly state-run institutions. On average it is at least twice as expensive to support a Pennsylvanian with a disability in an institution instead of at home, in their community.
Maureen Cronin, Executive Director of The Arc of Pennsylvania says, “Families actually do have the right to place their loved on in a state institution and force the state to pay for the necessary services – if the families on just the emergency part of the disability services waiting list did this, it would cost the state well over a $1 billion. But by and large, Pennsylvanians with disabilities do not want to live in segregated settings nor is that what their families want. Instead, they are asking for the resources to keep loved ones living, working, and learning in their communities – and Pennsylvania is not responding.”
The tragic reality in Pennsylvania comes down to this: families are clamoring and competing in a downward spiral of being “in-crisis” enough to convince the state that they need disability support services, and the few Pennsylvanians with disabilities that make it into the support system face constant obstacles to actually receiving supports. Direct support staff are the individuals who provide the day-to-day services that let Pennsylvanians live in the community – from job
transportation, to self-care, to support with managing finances – and the low wages they are paid lead to on average 40% turnover in these positions. Families who are lucky enough to finally receive funding from the state are constantly scrambling to secure the support they can now pay for, but cannot find quality personnel to provide.
The reason for these substantial problems is that intellectual and developmental disability services have been underfunded in Pennsylvania for the past 20 years. When compared to managed care organizations, nursing homes, and even the state general fund, disability services receive between 70% - 120% less in funding increases each year. The Arc of Pennsylvania is unclear whether this is due to our legislators and policy makers failing to understand the importance of these community support services or an underlying belief that people with disabilities are not as important as other
Pennsylvanians. No other waiting list for services in the Department of Human Services even approaches the breadth and magnitude of the intellectual and developmental disability services waiting list – not child care subsidies, not aging supports, not supports for physical disabilities.
When Governor Wolf released his waiting list funding proposal back in February, The Arc of Pennsylvania was dismayed; when the House further cut this number, The Arc of Pennsylvania was angered; and now that the Senate and House passed a budget that did not even ameliorate this cut, The Arc of Pennsylvania is outraged. The final amount of funding given to take people off the emergency waiting list in the 2016-2017 budget will most likely merely be enough to support the individuals who were taken of the waiting list last year, because these individuals were only taken off the waiting list in the last two months of the 2015-2016 fiscal year. The cost to carry over their care will take up most of the waiting list funding in the 2016-2017 budget. It is an excellent metaphor for how Pennsylvania approaches disability support services – the state celebrates while in reality Pennsylvania is constantly behind on its expressed commitment to individuals with
intellectual and developmental disabilities.
Pennsylvanians deserve better. The families in these crisis situations are often invisible because they are too busy trying to survive. The Arc of Pennsylvania exists to make sure these families are not forgotten, ignored, or forced to segregate their loved one away from the community. As Pennsylvania celebrates having a nearly on-time budget, The Arc of Pennsylvania will continue to argue that this is not enough – Pennsylvania needs a budget that supports our most vulnerable citizens.
Special by Michael L. Supey, Correspondent
Today, is the Presidential Primary in Pennsylvania, Connecticut, Delaware, Maryland, and Rhode Island. Over the past week, PA Disability News covered the Presidential Primary candidates campaigning in Northeast Pennsylvania with one specific focus;
Would there be any mention of improving the quality of life for people with disabilities in America?
Sen. Bernie Sanders (D) of Vermont, spoke to a capacity crowd on Thursday, April 21st at the Scranton Cultural Center. Campaign media representatives were quick to issue a press pass to this reporter, though PA Disability News is an independent news source. When asked whether Sanders typically includes remarks in his stump speech about disability rights, the media representative replied that generally he does not specifically mention disabilities but it is something he is very passionate about.
However, about forty minutes into his hour long speech, Sanders offered the following:
“A great nation is not judged by the amount of millionaires and billionaires that it has, or by the number of nuclear weapons that it has, or the number of wars that it gets into. A great nation is judged morally by how it treats the weakest and most vulnerable.”
“This is an issue that is not talked about very often. And there are reasons why, but let’s talk about it right here in Pennsylvania, in my state (Vermont), around this country, you’ve got millions of senior citizens and disabled veterans and people with disabilities trying to make it on ten- eleven- twelve thousand dollars a year social security. Think about it for a second. Again just do the arithmetic. Pay for your mortgage, pay for your rent, pay for your heating, pay for your food, pay for your medicine. You know what, you can’t make it on ten- eleven- twelve thousand dollars a year. And that is why I strongly disagree with Republicans who actually want to cut social security benefits. That is really quite incredible. And I happen to believe that not only will we not cut social security benefits, we are going to expand social security benefits.”
Sanders went on to say, “Very simple. Right now we have a Social Security tax system in which someone who makes five million a year contributes the same amount into the Social Security Trust Fund as someone who makes one hundred and eighteen thousand. You lift that cap starting at two hundred and fifty thousand and above so that someone who makes a million a year contributes the same percentage of his income into Social Security as somebody making fifty thousand. We’re able to expand Medicare by thirteen hundred dollars a year for people making less than sixteen thousand, and extend Social Security for fifty eight years. Now I have been campaigning. I have introduced legislation to do this. I asked Secretary Clinton to come on board this legislation. I hope that she will, as of today she has not.”
Sen. Ted Cruz (R) of Texas, spoke at the Radisson Lackawanna station Hotel, Scranton, on April 22. Upon request for a press pass, a member of Cruz’s Press Team said they do not allow non-accredited members of the media in the Press Pool due to “bad apples spoiling the bunch in the past.” She expressed regret for shutting us out, but did so nonetheless. This reporter did gain entrance with the general public.
Cruz did not mention individuals with disabilities in his speech or comments.
Former Secretary Hillary Clinton spoke to a capacity crowd at the Dunmore High School Gymnasium, Friday evening of April 22. PA Disability News was cleared for a press pass from the campaign media team. About twenty minutes into her thirty minute speech, Clinton offered the following,
“...We need more treatment for mental health problems.”
“People want to tell you what’s on their minds because they’re hoping that you or somebody can help. And the two things I hear the most about, yes of course economics- knocking down those barriers- but mental health and addiction. And so when I shake a hand of a mother or father or sister or brother or a child and they say ‘please do something about mental health’ I know it’s personal. Maybe it affects them, maybe it affects somebody they know or they are related to. “And I cannot tell you how many of those conversations have led to somebody saying ‘please do something about the heroin or opioid epidemic.”
“We are losing thousand and thousands of Americans of all age, but particularly young Americans, under 40. And we have got to address this so I will do everything I can within our healthcare system to remove the stigma on mental health and to tackle the heroin and opioid epidemic.”
The evening of April 25, Donald Trump spoke to a reported ten thousand people in the Mohegan Sun Arena in Wilkes-Barre, the only presidential candidate this election cycle to come to Luzerne County for his stump speech. There was no difficulty gaining a press pass to the event from the Trump media team..
In his near one hour speech, Trump did not mention individuals with disabilities.
In January of this year, RespectAbility issued the #PwDsVote 2016 Campaign Questionnaire to candidates. Jennifer Lazlo Mizrahi, President, confirmed today that Hillary Clinton, Bernie Sanders and John Kasich returned a completed questionnaire. Donald Trump and Ted Cruz have not.
Candidates with positions on disability rights:
Senator Bernie Sanders
Secretary Hillary Clinton
Governor John Kasich
Candidates without positions on disability rights:
Senator Ted Cruz
The Arc of Pennsylvania, along with partners, Rehabilitation and Community Providers Association (RCPA), United Cerebral Palsy of Pennsylvania, Inc., (UCP), and Pennsylvania Advocacy and Resources for Autism and Intellectual Disability (PAR), announced that after lengthy and candid discussions with the Office of the Governor and the Department of Public Welfare relating to the Chapter 51 (Home and Community-Based) Regulations, they reached agreement on important changes to the Department’s policies regarding the vacancy factor and the retention factor. The agreement also provides relief from the potential application of a rate adjustment factor (RAF) through FY 16-17. (A RAF allows the Commonwealth to cut rates midyear.)
Obtaining these changes in the Department’s policies are part of their joint efforts to secure access by individuals with disabilities and their families to high-quality supports and services throughout Pennsylvania. The agreement will better enable providers to maintain and sustain services and supports that meet the needs of each individual consumer.
An improved vacancy factor better recognizes the continuing costs that providers must incur whenever a consumer is absent from his/her residence due to medical or therapeutic reasons. A retention factor affords the ability to retain much-needed savings up to 2% without cuts to their future payment rates.
Funding for the proposals identified in this agreement will not reduce the Commonwealth’s and the Department’s current financial commitment to reducing the waiting list for accessible and high quality person centered services for Individuals with an intellectual disability and their families in state fiscal year 2014-2015. As evidenced by recent budgets, the Department believes that addressing the waiting list is important, and, in future fiscal years, the Department will follow the normal budget process to consider opportunities for new waiting list initiatives.
We recognize and appreciate the support and assistance of Governor Corbett in reaching this resolution. The agreement also reflects that our work is not done. Included in the agreement are provisions to continue discussions with the Commonwealth on the remaining challenges that Chapter 51 poses for supporting individuals and their families.
Source: The Arc of Pennsylvania