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.