Commentary: Delaware needs to keep its promise to disabled adults

When your child is born with a significant disability, you have no choice but to become a lifelong advocate, especially after your child turns 21 years old.

For me, this has meant advocating for the services that my adult sons with autism need as I have watched the staff turnover increase rapidly in recent years because of inadequate wages. It has also meant constantly running into brick walls when trying to get the services that we were led to believe would be there for our loved ones after age 21.

After years of following the advice to teach everything possible to our young ones in preparation for jobs and programs that would be available after age 21, we find ourselves abandoned.

The last thing that I expected was to be told while I was advocating for the needs of my sons that they are not a priority in the state. Yet, that’s essentially what mothers, fathers, sisters, brothers — caregivers have been told by the General Assembly’s Joint Finance Committee.

We are being told, in essence, just because we show up at Legislative Hall to advocate for our adult children … just because we believe the people who take care of our adult children are worth more than $9.50/hour … just because the workforce who supports our children is disappearing right before our eyes … the funding that supports our services is not a priority.

Jacque Lukaszewicz

There is funding for the Kalmar Nyckel, farmland preservation, and many other things that are not human lives.

Why do we parents show up at Legislative Hall, time after time, patiently explaining these issues to members of the Joint Finance Committee and other legislators?

We show up because we are afraid to DIE!

We are afraid to die because this state is doing NOTHING to prepare for the inevitable day when we do die and our adult children are left behind to fend for themselves — likely in a state institution as an “emergency placement.” Not only is institutionalization inhumane, but it will certainly be far more costly.

And the population of the over 21 special needs community continues to grow.

We were hopeful last year when every legislator and the governor enthusiastically supported the McNesby Act, promising full funding for our children’s care. But because the actual dollars weren’t part of the McNesby Act, we were told we needed to advocate for the funding this year. Yet, despite a robust state revenue picture, now we’ve been told that the needs of our adult family members aren’t a priority.

We are making our case to the top leadership in the entire state — the governor, the speaker of the House, the majority leader of the House, the Senate pro tem, and the Senate majority leader.

Nonetheless, we are being told even though we show up at Legislative Hall, even though the need is real, and even though it’s been almost 15 years since the system has been properly funded, our adult children (the people we advocate for because most of them can’t show up themselves) are not a priority.

Our families need leaders who will live up to the promise they made last year to prioritize funding for adults with intellectual disabilities.

Our families need to have these leaders demonstrate their support for full funding of the McNesby Act now, while revenue is available to do it, by ensuring that additional money for services is added to the FY 2020 state budget. Otherwise, we could be looking at a lot more money for alternatives like institutions. Would anyone on the Joint Finance Committee like to have one named after him/her?

Jacque Lukaszewicz is a resident of Townsend.

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