My twin daughters live with intellectual disabilities. We need help now | Opinion

When will we get equal consideration for funding? When will my daughters be important enough?

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By Kym Lambert

We were on the waiting list for disability services for 11 years. Last year, we were placed on the Emergency Wait List. We are still waiting. 

(Submitted photo)
(Submitted photo)

This is a state funding issue, pure and simple. We need Direct Support Professionals (DSPs) to provide skilled care for people with intellectual disability/autism (ID/A). There is just not enough funding to pay DSPs a wage that they can live on, so there is extremely high turnover and a lot of DSPs have left to take higher-paying jobs.

While we wait, our daughters remain state-qualified for full-time assistance, but we only get 26 hours per week. And our DSP left for a job waiting tables because she could make more money. It’s a travesty. I work 45 hours per week and then work the other 142 hours every week to care for my daughters. 

When will the (ID/A) population get the same consideration in funding and support that other populations get? Why have we waited for decades and still see little to no attention from state government?

My daughters are about to “age out” of the school system. As adults, they will not get the same support because these services are based on age, and not need. Their need doesn’t change when they turn 22! Why don’t people in the ID/A community receive services just because they need them?

How many horror stories must policy-makers hear before they’ll fund ID/A services? One of my daughters fell down the steps because she was left unattended when the other had to leave that room to use the restroom. My daughters can never be left unattended, not even for a few minutes. They are not typical children who can be left alone in their room, at the bus stop, or anywhere. They cannot pull up their pants. They cannot lift a toilet seat.

A mom of children with intellectual disabilities asks: When will it be our turn? | Opinion

If the situation doesn’t change and we’re left with 26 hours a week, my girls won’t be safe. They won’t have access to their community. They won’t have a sense of purpose. They’ll have one person watching them both and stuck in the living room all day. It’s heartbreaking.

I thought there was enough information in the press and public eye that decision-makers would see the needs of the ID/A community. So many people have written letters and demonstrated and met with legislators that it is shocking to see that the money isn’t there for people like my daughters.

When will we get equal consideration for funding? When will my daughters be important enough?

Kym Lambert lives in Washington County and is the mother of twin daughters with intellectual disabilities.

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Capital-Star Guest Contributor
Capital-Star Guest Contributor

The Pennsylvania Capital-Star welcomes opinion pieces from writers who share our goal of widening the conversation on how politics and public policy affects the day-to-day lives of people across the commonwealth.