Wednesday, February 26, 2014

Fighting for Sully. The gist of it. My letter to...well...anydamnbody that will listen. Feel free to share and to contact your elected officials and the gov about this. Please.

Dear Governor Tomblin,

My name is Trinity Nicholas, and I am the mother of an autistic child who is also bipolar. His behaviors are such that he cannot be maintained in the home (running away, aggression, and many others), and he was
on the waiting list to go into the Potomac Center's residential intensive training program. Now that the center has been closed due to abuse allegations, there are no other options in-state for residential treatment. There are comparable, qualified facilities in other states that would accept my son, but the state is
refusing to pay for these kids to go out-of-state for services, even though they can't offer them anything here, and even though these children are a danger to themselves.

My son has been in crisis for two weeks now, and no help is available. The WV Bureau of Medical Services told me I have no options. Four psychiatric hospitals turned him down for treatment (Riverpark, Highland
in both Charleston and Clarksburg, and BARH in Beckley). The Highland in Clarksburg has an autism and MI unit but refused services to my son because he can't potty train and is not independent with activities of daily living. The doctor's advice was to "hang in there". Youth Services in my county DHHR office has not returned my calls.

Basically, they turned these kids, who were deemed by their clinical treatment teams to need residential placement, out of the Potomac Center and are offering  them no options. What if  they run away? What if they hurt themselves or others? Who is responsible for that? The parents. The parents, even though
it has been deemed by a treatment team that the child is beyond what can be managed in a family setting. The parents who have called the psychiatric hospitals, WV Department of Health and Human Resources (both CPS and Youth Services), WV Bureau of Medical Services, and multiple care-giving agencies and
are being offered no options and no help.

The parents are being told to "hang in there". They are being told if they were "just more consistent" the child would do better in the home. Never mind that these kids are mentally impaired, mentally ill, and brain damaged. Never mind that you can't rationalize with some of them and no rewards work because they don't care about anything. Never mind that they can stay up for days at a time. It's all the parents' problem.
Situations like this are why you have suicide/homicide situations. The parents deal with it until they can't. Help is needed, and it's needed now.

WV could contract with surrounding states and get these kids the care they need until a suitable placement is re-opened in state. What we can't do is bury our heads in the sand and pretend that these children have
become magically manageable in the home because the state doesn't want to pay for out-of-state services.

Currently, the only way to force the state to pay for out-of-state placement is to temporarily or voluntarily relinquish parental rights to the child. However, if you temporarily relinquish, it is the state who decides when the child is "better" and can return home. The problem with this is, many of these children have the Title 19 Wavier program, and if they stay in a residential placement for more than six months, they lose services (their Medicaid card which pays for respite help and treatment). If they are admitted to a facility and it is determined that their primary diagnosis is psychiatric instead of autism, they lose their Medicaid Wavier
services. If the children are in state's custody, it is the state that has power over them losing Medicaid Wavier. If they lose Waiver, the program is on such a long waiting list that it can take four to five  years to get it back.

So potentially, if you allow your child to go into state's custody, the state could send them out-of-state for just over six months, cause them to lose Waiver, and send them back to their parents with no services at
all. Or they could send them to a psych hospital for a few weeks, cause them to lose Wavier services, and then send them home to their parents.

 I should not have to relinquish my parental rights to the state to get my son the  help he needs. He should not have to lose his Wavier services to get the treatment he needs. His clinical team should determine how long he needs to stay in treatment. All of this should not be determined by the government's red tape, and it should not be determined by bureaucrats that don't understand the populations they are allegedly serving.  

I beg of you to address this issue as it impacts many families. We need options. We need hope. I can be reached at 304-553-9796. I would like to request a meeting to discuss this issue with you further.


Trinity Nicholas, MSW,