The InVisionary

If not now, when will Pennsylvania fully fund its intellectual disability system?

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Read this op-ed at the Pennsylvania Capital-Star.

I’ve spent 40 years of my life devoted to people with Intellectual Disability and Autism (ID/A) who were pushed off to the margins and mostly out of sight. I have sought to bring them into the active life that you and I have always had – meaningful lives in their homes and communities.

Community services started in earnest in the 60s and 70s. At that time, there was a thirst for civil rights and for righting wrongs, especially those perpetrated against people of color, gays and lesbians, and women. As years and decades went by, the fight for civil rights and justice evolved to include people with disabilities who fought against being excluded by state and local governments that favored isolated institutions over meaningful community living.

Pennsylvania leaders such as Govs. Richard Thornburgh and Robert P. Casey Sr. spoke out on behalf of disability issues and prioritized funding services. There was a period of time when many believed PA to be a leader in innovative ID/A services, serving as an example to the rest of the nation.

The earliest supporters of community programs were full of idealism, youth, and energy, but that idealism finally collided with the cost of living as rates and wages were frozen. Staff members quit to take jobs with wages that met their basic needs. Sadly, decades have passed without the needed investment in quality rates and workforce wages.

For decades, advocates in the ID/A community have pleaded for additional funding to prevent the crisis we now face. This year, when there are billions of dollars available in the state treasury, we have the resources.

My colleagues and I have long feared that not fully funding key services would create an uncertain future for the ID/A community.

In the past five years, that uncertainty has evolved into crisis. We are now faced with the collapse of the system. We cannot hire enough Direct Support Professionals (DSPs), the workforce that directly supports people with ID/A. Without DSPs, families are losing critical day support and employment services. More than 6,500 people have lost services, and on any given day, service providers cannot fill 15,000-plus DSP shifts.

In the last few months, more than 100 media outlets across the Commonwealth have run news reports, personal stories, photos, and opinion pieces calling for an answer to this crisis.

Unfortunately, the recent effort to offer a $1/hour increase to community-based DSPs falls far short in resolving the problem. Meanwhile, Pennsylvania state employees doing the very same job earn 30% more from the identical Medicaid fund. The bottom line is that we can’t hire people at $14/hour, and we are unlikely to find many more DSPs who will work for $1 more than that.

To be clear, this crisis can be solved this year.

Providers are asking for an additional $65 million in state funds to be matched by the federal government. Doing so will give programs starved for resources and staff the opportunity to hire employees who will provide individuals with ID/A and their families the help and support they so desperately need.

Gov. Tom Wolf has offered his proposal.

Our hope now moves to the Republican and Democratic members of the General Assembly who listen and respect the voices of their constituents and who have heard from hundreds of families in crisis.

For decades, advocates in the ID/A community have pleaded for additional funding to prevent the crisis we now face. This year, when there are billions of dollars available in the state treasury, we have the resources.

If not now, when?
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