HOW DID THIS HAPPEN?!

By now, I hope that everyone has read about Salima Mabry and her son’s ordeal in Wake County (eight days in a small room with no bed, no shower, no TV and no hope).  Fortunately, this mom reached out to many resources: Disability Rights NC, the press, etc.  Her son finally has a place to go during this crisis, even though it’s 200 miles away.  What about the many other youths with autism who find themselves in a crisis situation?  Essentially, there aren’t any rooms at the inn…Adults with developmental disabilities like autism can access the NC START system, but there is no equivalent for those under 18 years old.  Given the limited number of CAP MR/DD slots and the rising number of children with autism, the number of children in crisis is bound to rise.  There needs to be an alternative to a recliner in a small room, to having a child without the capacity to understand what is happening be handcuffed for his own protection…

It was reassuring to read the many comments left about this article that were sympathetic to Joshua’s plight; I hope that NC will be able to take some action to prevent this from happening to others.  We need something like NC START to help children!  The Murdoch Center has several very successful programs to help youths with autism (PATH, STARS, BART)—but there is only one Murdoch Center in all of NC.  Considering the rise in the incidence of autism, this needs to be addressed immediately (as in, yesterday)…before there are more Joshua Stewarts.

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14 Responses

  1. I am sending this to every state legislator. Our state has tens of thousands of families who, unfortunately, are one crisis away from Joshua’s plight.

    • I hope you’ll include Scott’s letter, since he describes the situation so much more precisely than I did. Thanks for all that you do!

  2. In response to the N&O story the Autism Society of North Carolina has submitted the following letter to the editorial staff offering additional “big picture” perspective on the critical need for children’s crisis services for kids with autism or other developmental disabilities. Here is the content of that letter.

    >>>>>>>>>>>>>>>>>>

    January 27, 2010

    To the Editor:

    I read with both interest and sadness the article on the lack of available care for Joshua Stewart (Mom camps out to get spot in mental ward for son 1/27/10). Unfortunately, Joshua’s story is not unique. Many people living with autism or other developmental disabilities currently are unable to receive the crisis care they need throughout the state.

    While Joshua is now in a state psychiatric facility, why did his family have to wait 8 days? A bed at Broughton provides a solution, but a psychiatric hospital is not the best option for a child with autism. How can we improve our system of care so that needed crisis and community support services are available to all children like Joshua?

    First, let’s take a look at the numbers… Joshua has autism, a developmental disability that occurs in 1 of every 110 children born today, according to the CDC (Dec. 2009). Not all children with autism are the same and not all will need crisis services, but there are over 9,000 children with a primary diagnosis of autism in the NC Public Schools, and the number grows each year. At the Autism Society of North Carolina, calls for crisis services have increased dramatically and there are few options available to solve their crisis. Children with other developmental disabilities also need crisis services, but with the recent budget cuts there is clearly not enough money to meet these needs.

    Studies have shown that with appropriate community and crisis supports, children with autism can avoid institutionalization. Also, taxpayers pay significantly less when children are able to remain in their communities. Dr. Michael Lancaster’s (State Chief of Clinical Policy) comments about the desire for the state to be able to support Joshua through a local crisis center and community settings reflect that the state does understand these facts. The state initiated a program to provide crisis services for adults with developmental disabilities called START (Systemic Treatment Response Assessment Team). Unfortunately, there is not a comparable program for children.

    North Carolina has excellent clinically intensive support programs for people with autism in specialized programs at the Murdoch Center in Butner. However, those programs lack the capacity to serve crisis needs. And with recent significant cuts to community services, local respite options such as respite care or group homes are limited.

    Children like Joshua will continue to need crisis and support services. As a state, we must decide that providing appropriate options for care is a priority and make sure that there are funds available to provide these services.

    Currently there is no safety net for children with autism or other developmental disabilities like the START program. The state must commit to establishing community based crisis services for children with autism and other developmental disabilities. In the meantime one short-term option for situations like Joshua’s could be to increase the capacity for crisis services for children with autism at the Murdoch Center, which has proven to be a clinically effective model. For a child like Joshua, the Murdoch program is a much better option than a psychiatric facility.

    In closing, imagine if you took your child, grandchild, or family member into the doctor and had to wait 8 days before receiving help. How would you feel? I think we know the answer. That is why all North Carolinians must work together to fix our system of care and ensure that this does not happen again.

    Sincerely,
    Scott Badesch
    CEO, Autism Society of North Carolina

    • Scott, thank you for describing the situation so much more eloquently and precisely. I sincerely hope that NC legislators are listening!

  3. I don’t know what bothers me most, the eight days it took the state to find Joshua a bed or that feeling in the pit of my stomach as I imagine the “treatment” he will receive from an understaffed, and underfunded facility supported by a system whose primary mode of operation is shoveling poop to fill a whole dug by years of mismanagement and fiscal irresponsibility ($400 million said to be wasted) . It is Joshua’s safety, and all those like him, that will keep me up tonight. Since December 2000, 82 patients had died at state mental hospitals under circumstances that raised questions about their care. In the past seven years, investigations have concluded that at least 192 employees of state mental facilities abused or neglected patients in their care.

    http://www.newsobserver.com/news/health_science/story/73642.html

    • Bensmyson: I agree that it is very disturbing to think of a child with autism in a state psychiatric hospital—not an appropriate setting for him at all (I can only hope it is better than the recliner). Clearly, the citizens of NC need to press for change (and be willing to pay for it). It is absolutely true that adults with mental illnesses also deserve better. Please help encourage voting citizens to be activists!

  4. Health care reform that had a public option would of helped the Joshus of the US. But when I asked friends in MA why they voted the way they did they said we have healthcare reform we have full coverage and no pre existing conditions Why should we vote for a senator that would help the rest of the US that is to selfish to care about their neighbors. In the south I have heard the saying “We take care of our own” (aka don’t expect me to share with others,) its sad to see that when it came to a reform that would of helped so many families outside of MA residents of MA decided to “Take care of their own” and left so many Joshus not in MA to deal with it on their own.

    God people you should hear the services AU kids get in MA it would break your heart that you cant live there.

    • Vsheehan: I hope we’ll have health insurance reform in NC soon to require coverage for autism therapies (ASNC is working hard on this!). It’s often true that you get what you pay for: North Carolinians pay much lower state taxes—income and property—in exchange for fewer state services. Massachusetts has an excellent reputation for various autism-related services, as well as an outstanding educational system. And, today Boston had a beautiful snowfall; maybe we’ll be that lucky tomorrow or Saturday! North Carolina is fortunate to be the host to TEACCH as well as the Autism Society of North Carolina, both beacons of hope to individuals with autism.

  5. This is an excellent post and our hearts go out to Mabry family for what they have been through. Unfortunately this in not an isolated incidence. So why do the politicians and our leaders continue to turn a blind eye to the real pain our families endure every day? NC is by no means an average state when it comes to autism. We have the UNC TEACCH Center founded in the early 1970’s and internationally known for its autism trainings and workshops. The Autism Society of NC is and one of the oldest, largest and most successful Autism Society’s from across the United States. Our Autism Society will celebrate its 40th anniversary this year. We have the largest bookstore and the oldest camp for individuals with autism. For many of these reasons we draw families from across the country that flock here seeking a better life for their loved ones with autism. In my humble opinion, I don’t think the grass is any greener in our state than their home states, but I do think it greatly raises our rate of autism. If we were to get an accurate handle on the numbers I highly suspect we would find that the cases for autism in NC are much higher than the national average. More like 1 in 75? The numbers in our school system are also very much under reported, maybe a more realistic number would be 13,500. Why is that?? We can’t just look at the cases of those with a diagnosis of autism , there are those with developmental delay, multi-handicapped, other health impaired, speech language impaired and even hearing impaired in some rare cases. But guess what…a lot of these children actually ALSO meet the criteria for AUTISM!! Let us not forget the newly released CDC study that may have just come out in 2009, but it is based on already old data. So unfortunately our state of NC is swimming in cases of autism. And, with no programs in place to care, house, or employee these individuals once they leave the school system who will care for them? I think we should all take Ms. Davis’s advice and take just a moment to forward this article & letter on to all of our local and state representatives and ask them, “When will enough be enough?” Our children and adults with autism deserve better!! You can’t just keep cutting services when the numbers keep growing!

    • The Stevens Family: I absolutely agree that it is not feasible to cut services or funding when the number of individuals with autism continues to rise, perhaps more in NC than elsewhere. I also understand that the state budget is in dire shape—I don’t know how to solve this problem. I know it won’t be easy, and it won’t be comfortable. However, we as a society of humans should not balance budgets on the backs of those with disabilities. I personally would be happy to have more of my tax dollars go to help those in need than to receive a tax cut. I’m not wealthy and could certainly use the extra cash…but I’d much rather help someone with a disability.

  6. Here’s a big question: Is this what it takes? What does it take for people to start panicking? Autism is a national health emergency. This kid had public insurance, health care reform won’t stop this from happening. This is about autism and how in 15 years there won’t be anywhere for our kids to go. The federal and state governments cannot handle supporting the ever increasing numbers of people with autism. Scientists and doctors continue to feign exasperation while doing million dollar eye gaze studies, meanwhile our numbers are exploding out of control. I will say again what I’ve said many times before- I support research into causes, prevention, treatment, and potentially a cure for this devastating medical disease that literally stole my son’s life away. Don’t misunderstand, I will continue to advocate for services and supports- my child will certainly need those forever. But only focusing on supports and services is like attempting to stop up the new orleans levees with bubble gum.

    Autism organizations need to get real, get out there and start flipping out about these numbers. ASNC hasn’t even changed its website to reflect the latest numbers. We should be out there shouting it from the rooftops. We should bring our kids. We should tell people- autism is not a psychiatric condition- it is a multi-system illness that deserves dedicated wings of hospitals to treat. True autism insurance reform is meaningless unless we can have treatments that help our kids get better. (Though I’m disgusted daily that my husband works for UNC hospitals and the insurance they provide does not cover evidence-based treatments for my son’s medical condition.)

    No, I refuse to support more tax increases. I did that last year and they paraded our kids around saying “we need to help poor people with disabilities blah blah blah” and then they slammed our community with the biggest hit. Until these legislators can show some more fiscal responsibility to fund things that matter, then I will not support me paying more when people with disabilities get less.

    • Kristine: you’re right that it can’t be research versus supports—families and individuals with autism need both. Since North Carolina’s revenue situation isn’t predicted to get better for another year or more, everyone who cares needs to send an urgent message to their legislators that we CANNOT afford any more cuts to Health and Human Services. Our kids need research-based interventions at home and at school in order to reach their full potential. There are so many more stories like Joshua’s, where the system is overloaded and couldn’t help. As our kids grow up, there will be more and more stories like

      • oops–cut off my last sentence. Here’s what it was supposed to be:
        As our kids grow up, there will be more and more stories like his, and this shouldn’t happen in this affluent country!

  7. Autism is a spectrum disorder, however, more and more, Severe autism is not being shown to the public. There is a great video on you tube called “severe autism when there is no answer” The video is made by a man with Aspergers (a fellow aspie) who also has an autistic son. Very enlightening. Youll be surprised.

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