By Colleen Tomko, parent of an adult son with Intellectual Disability and Autism (ID/A). Colleen has been involved in disability advocacy for 35 years, ranging from local and state committees, boards, and initiatives, to providing testimony at a US congressional hearing on special education funding. Her son was the first student with his level of needs to be fully included in their school district and to continue to work on his IEP goals on a college campus for his four transition years. She has worked with Parent to Parent of PA, Arcadia University Inclusion Institute and Include Me from the Start. She is president of Kids Together, Inc. and has an online store to promote inclusion called “The Parent Side.” She is currently a co-chair for PennTash. 

I’ve experienced firsthand the challenges created by systems intended to support people with ID/A and their families. These systems are difficult – seemingly impossible – to navigate. They frequently fall short of meeting critical needs.

That’s why I want to stress the importance of supporting Governor Josh Shapiro’s fiscal year 2024-25 budget recommendations for the ID/A community.

This budget will address a large portion of the targeted population. It is my understanding, and experience too, that many individuals with complex needs will continue to receive services outside of the Office of Developmental Programs and the Office of Long-Term Living. All PA Department of Human Services rate-based programs supporting people with disabilities are in desperate need of additional rate funding to address thousands in need.

The Governor’s budget recommendation of $216M in state general funds would be supplemented by an additional $266M in federal funds. This will bring significant stability to home and community-based services for people with ID/A, including families who have been eligible for service but have waited years to decades on state waiting lists. The allocation of $34M to address the state’s 6,000-person Emergency Crisis Waiting List will be a lifeline for those people and their families, particularly elderly caregivers.

Funding alone is not enough, but it’s a great start. Ongoing issues plaguing our systems need to be addressed. “Waivers,” which are the path to receiving services, must be tailored to the specific needs of each person, regardless of diagnosis or location. It is unacceptable for human beings to wait years to become eligible for services and then, once they are deemed eligible, still not be able to get support because of staffing shortages.

The failure of adult systems to collaborate with schools leaves our sons and daughters transitioning into adulthood without plans. The adult systems do not budget nor allocate sufficient funds based on the actual number and needs of individuals exiting schools. Many people end up literally sitting at home on waiting lists with unmet needs. This terrible situation leads to isolation, negatively impacts the person’s overall well-being, and leads to their separation from the very community they long to be part of.

We need proactive budgeting and planning to support transitions and prevent these Pennsylvanians from falling further into crises.

A person’s overall quality of life and respectful treatment need to be our priorities. This means going beyond checklists and bureaucratic structures and focusing on the unique needs of each human being. Additional funding is crucial to not only prevent abuse, neglect, and failure through proper support, but to lead to successful opportunities and outcomes.

So, to every member of the General Assembly, I urge you to vote for Governor Shapiro’s budget recommendations. Pennsylvanians with disabilities – your constituents – deserve better than they are currently receiving. They deserve a system that values their worth and provides the support they need to thrive. Let’s come together to make that a reality.

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