As a parent and longtime advocate, I’ve experienced firsthand the challenges created by systems intended to support individuals with disabilities and their families.
These systems are difficult, if not often impossible, to navigate. They frequently fall short of meeting critical needs. That’s why I wish to stress the importance of supporting Gov. Shapiro’s FY 24/25 Budget Recommendations for the ID/A (Intellectual Disabilities and Autism) community.
This budget will address a large portion of the targeted population, however many individuals with complex needs remain served outside of the Office of Developmental Disabilities where the budget recommendations will impact and under the Office of Long-Term Living.
The governor’s budget recommendation of $216 million in state general funds would be supplemented by an additional $266 million in federal funds. This will bring significant stability to home and community-based services for individuals with ID/A.
Also, the allocation of $34 million to address the state’s 6,000-person Emergency Crisis Waiting List is a lifeline for those thousands of individuals and their families, particularly elderly caregivers.
Funding alone is not enough, but it’s a great start. Systemic 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 students 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. Thus many people literally end up sitting at home on waiting lists with unmet needs. This terrible situation leads to isolation and negatively impacts the person’s overall well-being.
We need proactive budgeting and planning to support transitions and prevent these Pennsylvanians from falling 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 Gov. 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.
Springfield Township resident Colleen Tomko has been involved in disability advocacy for 35 years. She is president of Kids Together Inc. and has an online store to promote inclusion called “The Parent Side.” She also co-chairs the Pennsylvania Chapter of TASH.
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