2011/04/30/email to NC legislators

2011/04/29

2011/04/30

2011/05/01

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In response to this news item, we emailed the following message separately (with only one minor tweak in between) to Senator Floyd B. McKissick, Jr. and Representative Paul Luebke. (We definitely voted for Lubke and probably McKissick, though I don't remember specifically.)

Text

Dear Mr. [McKissick/Luebke],

We are writing to you to as two of your constituents who are opposed to proposed cuts to education and health & human services, especially where those cuts affect those with developmental disabilities such as autism.

Many families depend on these services for survival, as children with developmental disabilities require resources that most families otherwise would not have access to and which they struggle to inadequately provide themselves. These services have already been deeply cut, again and again, and have not been adequate during the 8 years we have been working with them.

Here's our story.

Sandy's 18-year-old son has severe autism. He was diagnosed at age 4. Thanks to NC educational policy, he was able to go into a self-contained classroom for developmentally disabled kids beginning at age 5.

We began seeking mental health services for him through The Durham Center (TDC) in 2003. He went through the intake process in late 2003 and qualified for a number of services -- but only a few weeks after this, TDC unaccountably closed his case. We did not know what had happened at first; it took several months for us even to find out, and we still do not know why it was done. They refused to simply re-open his case, and we had to go through the intake process again.

Unfortunately, the intake process had been made significantly more complicated. Without getting into details, it took us four more years before we were able to get him re-admitted to TDC's system, and he could begin receiving therapy services.

Meanwhile, some therapy services had been provided through the school, but not dependably; the training he received there became less appropriate for his condition as he moved from elementary school to middle school, and was reduced to almost nothing by the time he reached high school (Jordan) in 2007.

In 2007, his behavior problems -- initially due to puberty -- took a sharp turn for the worse, exacerbated by the school system's failure to transfer his records, which meant that Jordan did not continue with the training, protocols, and routines that had been working for Josh when he was at Githens.

I'm not sure how to accurately convey the severity of the problems we had coping with him at home, except to mention that we had to install a keyed lock on the front door and bar all the windows to prevent him from escaping the house in the middle of the night -- and his younger brothers took to locking themselves in their bedroom most of the time so he wouldn't hit them.

In 2008, we finally succeeded in getting Josh back into The Durham Center's system, and he began receiving some therapy which was immediately helpful. He needed more of it, as the therapy only covered weekdays and he was displaying problem behaviors on the weekends, but before we could find a worker who could provide weekend therapy, the hours were cut -- and then cut again. We spent a lot of time and energy appealing the cuts, but largely to no avail; this only delayed the downward spiral. Eventually the hours were cut to the point where the services became essentially useless.

There is a happy ending to this story.

In 2010, Josh was admitted to The Hughes Center, an ICF/MR training facility in Danville Virginia, that had only just begun accepting Medicaid patients from North Carolina. Hughes provides intensive training for DD kids, with an average length of stay of 9-12 months. ValueOptions, which had approved Josh's stay, began trying to cut it short after only about 6 months, citing the need to move him to a NC facility -- without ensuring that one would be available for him, much less that it would be suitable -- but through the appeals process, we were able to delay his discharge long enough that we were able to find a facility within a few months (this after many years of searching for one, and Josh having been on at least one waiting list since 2006), and he moved to an ICF/MR group home managed by RHA Howell this past February. The home is less than an hour's drive from our home, so Josh is able to receive family visits regularly.

I should emphasize that we were extremely lucky to find this residential placement in time. There appears to be absolutely *no* formal system for locating suitable facilities for kids who need them -- not even a *list* of group home facilities across the state. This makes the system even more unfair, as placements are more likely to be allocated to families who have personal connections within the system.

That's where the story ends now -- with Josh in a place where he is properly cared for, where he can stay for the rest of his life, and where his family can visit him.

Josh's stay at RHA is paid for by Medicaid. If Medicaid funding is cut, we do not know how this would affect Josh's residential services. If his residential funding was dropped, we do not know where he would be sent. If we had to bring him back home, it would be a disaster for him, for us, and for his two younger brothers.

We are already in a financial disaster state from many years of being unable to take on full-time employment due to Josh's unpredictable needs. Recovering from that situation is proving difficult in this economy, even with my skills (I am a computer programmer and technician) being relatively high in demand compared to other types of employment. I can't imagine what some other families may be going through. If our situation is fortunate, I'm really having difficultly thinking about what "unfortunate" might look like.

In summary: these services are not luxuries, frills, or "extra". They are the only "homeland security" protecting many people -- however imperfectly -- from falling off the financial cliff, and costing the state in ways that are difficult to measure.

Please do everything you can to prevent reduction in Medicaid and other health services. In a time of economic crisis such as we are now in, these services are needed *more* -- not less.

Thank you for your time.

Nick Staddon and Sandy Hall
[full street address]