Stepping up

North Carolina must do more to help parents of special needs kids cope with the strain.

November 8, 2012 

Hear the voices of parents who share the burden, emotional and financial, of having children with special care needs:

“This is about our families being able to survive.”

“To afford the care we need for our son, we short sold our home. We moved into a rental, spent our kids’ college fund and all of our savings.”

“I’m at a breaking point now.”

“Sometimes, I lay in bed and just look at my son and wonder where we go from here.”

Even those parents who don’t carry the weight themselves can identify. A mother and a father will do whatever it takes to see that a child is fed and safe and loved. Indeed, no one is surprised that these gallant parents think only, what else would we do?

So, as reported in Sunday’s N&O, they carry on, up a hill that for most just gets steeper as life goes on.

The state of North Carolina, through the federal/state health program Medicaid, pays about a third of the $517 million a year that goes toward at-home care for kids with special needs such as autism.

That’s good. It’s kind. It’s smart. It’s what the state, carrying out the public will, ought to do for its citizens, no matter what age.

Home support

There is strong evidence that shows these young people are better off in a home setting, as opposed to an institution. They learn to do more. They are more comfortable. And with some assistance, their parents can muster enough time and energy to invest in their care while carrying on with jobs and other responsibilities.

But the state’s ability to pay for these services is lagging, which perhaps is not surprising in the midst of a very slow economic recovery. There are almost as many people on the waiting list for services as there are actually receiving assistance.

Legislators say they want to help as many people as they can, which sounds fine unless you are on a waiting list and are in danger of making the transition from the middle class to poverty. Then waiting is not so good.

Toward gaining more efficiency, lawmakers are consolidating the help under fewer agencies. That will save more money for needs, they say. That is well and good, and the state obviously can’t spend money it doesn’t have. And this aid is dependent as well on the federal government.

There’s no easy solution, but obviously the members of the state’s congressional delegation need to make this a cause of theirs, to boost that federal aid. State legislative leaders, Republicans who are advocates of public-private partnerships, can look for ways to raise money to help more of these families. And Republican Gov.-elect Pat McCrory has a role to play both in securing government money and in forming those partnerships.

Those who wait

This ought to be viewed as a serious obligation. After all, officials made the decision to shift care from hospitals and other types of institutions to the home, and they presumably were prepared to do what it took financially to provide for these kids, whose care would be far more expensive in an institution.

There are 9,000 people on a waiting list. They deserve the same help with care that those fortunate enough to be receiving help are getting. No family should go broke and be emotionally wounded day in and day out just because their number hasn’t come up.

Hear the voices, of the mother with two children in need. The fathers of sons with disabilities. Hear the desperation of one parent whose son has autism: “If we got this service, it would be like winning the lottery. It would change everything.”

Things need to change, and things must change for so many. They just must.

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