We have children living with intellectual disabilities. We’re at the end of our ropes | Opinion

By Sandi Shaffer

As a mom of an adult daughter with intellectual disabilities and autism, I’m writing to plead with Gov. Josh Shapiro and the General Assembly to address the ongoing crisis impacting families like mine.

We are at the end of our ropes.

The crisis of so few being willing to work as Direct Support Professionals (DSPs) is creating a tremendous hardship for us, especially those who have to depend upon the PA Office of Developmental Programs to be able to survive.

Families like mine are struggling every day, and the toll on us is leading to family disintegration. Symbolic actions don’t help us. Resolutions honoring front line workers or direct support professionals don’t do anything.

Do something real before someone dies from the absence of services due to the inability of programs to recruit, train, and retain qualified DSPs.

The crisis in the ID/A community is severe. Last year’s legislature and administration failed to increase funding to address this crisis. But we moms, dads, and families can never give up, can never take a break. We are hanging onto our very existence by barely a thread. Waiting for years for help, and not knowing if we’ll ever get help, is simply cruel and discriminatory toward the most vulnerable in our Commonwealth.

I invite members of the General Assembly to walk in our shoes and care for one of our adult sons or daughters with ID/A for a day. If they did, they would understand the challenges and hardships we face.

I implore the General Assembly and Shapiro to come together and SAY YES to the unified ID/A Budget Request for $430 million for ID/A programs. Members of the General Assembly must prioritize this crisis and respond to the desperation of families who are overwhelmed and under-supported.

The crisis is impacting thousands of Pennsylvanians waiting for services. They are sons and daughters like my Kate, whose parents love them and want them to live a fulfilling life.

Kate and I are people. We’re voters. We’re citizens of the Commonwealth. We can’t wait any longer. We need help now.

Sandi Shaffer is the mom of Kate, a young woman with an intellectual disability.  Kate is a 2017 graduate of The Children’s Institute of Pittsburgh. Sandi is an advocate and task member of The PA Family Task Force, a statewide advocacy taskforce on behalf of families with children and adults with disabilities. Sandi has advocated for Kate and others in the intellectual disability/autism community for more than two decades. She and Kate live in Westmoreland County.