By Anne Couldridge, mother of an adult son with Intellectual Disability/Autism (ID/A). She and her family live in Cumberland County, Pennsylvania.

 

My son graduated from high school in 2021. Like many special education students, he then fell into the abyss of the adult service system for people with ID/A – a system that has been historically underfunded and understaffed.

There are no words to describe the heartache and emotional rollercoaster that happens when you first learn your child has an ID/A diagnosis. You experience sleepless nights, invest hours into research and therapies, have guilt over not focusing enough on your neuro-typical children, and feel isolated and alone, even if you have a strong family/friend support system.

School becomes your main system for services and support, and the worry and sleepless nights never truly go away. You experience the trauma of stigma – stared at in public, teased, difficulty making friends. You focus on helping your child grow and gain independence, communication, and job skills. Then graduation arrives and leaves you and your child with an uncertain future.

For many decades, people like me have fought for the same opportunities for our children that other sons and daughters have. In my opinion, it’s a value statement that this year’s proposed state budget doesn’t even scratch the surface of what people in the ID/A community need. That means our trauma continues as we realize our family – my son – is simply not a priority.

Society already stigmatizes my family. Bureaucracy and politics marginalize us even further by allowing us to flounder without adequate support.

Our son is nonverbal, has autism and intellectual disability, and has a seizure disorder. He requires 24/7 assistance. We receive only three days of professional support per week and sit on a waitlist for more support. Because of this, my husband left the workforce to care for our son. Sadly, many families like ours face this decision.

Some in our community would cruelly argue that taxpayer dollars shouldn’t support the services our son needs. To them I would say that my husband retired from the Air Force with over 20 years of service to our country. He is a veteran with a second career in corporate America. We pay taxes, vote, and engage with our community. In other words, we fulfill our civic duties. Yet, when we need something in return for what we have contributed it is not reciprocated.

We want what every parent wants: safety, security, stability, and happiness for our son. If we were to die today, what would happen to our son? His safety, security, stability and happiness would be jeopardized. And if anyone reading this thinks that’s okay, I would question their values.

Who will support our son? Who will provide routine, stability, social and medical oversight, and behavioral supports? Who will be here to allow him to live in his home and community when we no longer can? Who will protect his freedoms?

We need Direct Support Professionals (DSPs). Today, DSPs make low wages on par with unskilled laborers. I don’t understand that. It’s complicated, mentally, and physically demanding work.

We need DSPs who are paid appropriately for the work they do so there will be enough DSPs to support people like my son. He deserves the quality of life that only his family and skilled DSPs can provide. To accomplish this, our state government needs to prioritize funding so the people who need the most support can access it.

Wouldn’t it be great if PA decided to lead the way for the rest of the Country by investing in these services? Let’s pay the skilled workforce of DSPs what they are worth and recognize the important, life-altering service and work they do.

Legislators, please hear our voices!