Ari Ne’eman Appointed to The National Council on Disability

Good News for the Autism community, and for the cross disability movement as a whole. Ari Ne’eman has been announced as one of President Obama’s latest Presidential Appointees. He is currently awaiting confirmation by the senate for a position on the National Council on Disability. You can read the press release on the White House website here, as well as the names and Bios of other Appointees.

This is a big step forward for the Autism Community, particularly (but not exclusively) for the Neurodiversity movement. Ari has been pushing for the needs- and rights- of the Autistic community for years, and to have him appointed to the NCD is certainly the next move in his unrelenting efforts to promote our cause. He has also been involved in cross-disability efforts, an important thing to keep in mind.
There are a couple of pieces about him worth reading if you want some background from someone who isn’t a Blogger. The UMBC article has a lot of information about his childhood and how he got into advocacy, and he has been featured as a leading Autism Advocate in such publications as Newsweek Magazine and New York Magazine.
I have contacted my Senators and President Obama to let them know how pleased I am about this appointment:

I would like to let you know how pleased I am with President Obama’s recent Nomination of Ari Ne’eman to the National Council on Disability.

Mr. Ne’eman has worked tirelessly to make sure that the interests of individuals of all ages across the Autism Spectrum, be it Employment Issues for higher functioning Individuals, Access to AAC Devices for those who are non-verbal, or even in assuring that the lower functioning individuals on the Autism Spectrum are safe from care giver abuse and have access to community based services. His work promoting the causes of the Cross-disability community helps all disabled Americans fight prejudice and give back to their communities.

I am proud to have his voice as the one that is representing my needs as a Disabled American, and look forward to his confirmation, as well as all the work he will do on the NCD. I also look forward to his working along side you all to protect the interests of all Americans though these efforts.

I would like to encourage you all to write similar letters of support; is a useful tool for this, but if you don’t want to register, you can look up your Senators and their contact info on this page of the site. If you want to thank the president, you can do so either through the above mentioned or on the White House website, here.

Ari is not only an openly Autistic appointee, he’s also the youngest in US history- the previous holder of that title was Mike Lopez at the age of 24. But his experience in disability advocacy is larger than some people ten years his senior- just look at the mini-bio in the Press release, and realize that it is a MINI bio. He just spent this past summer in an internship in DC, and has been very active- both quietly and in the press- over the last several years, all while also being a full time student. With his graduation coming up in the spring, I am looking forward to seeing what he’ll achieve next.

Seclusion and Restraint- An Update

Back in May I covered The Ed and Labor Hearing on Seclusion and Restraint. This week, there is an update on that front- Chairman Miller, Representative McMorris Rodgers and Senator Dodd introduced Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) and Preventing Harmful Restraint and Seclusion in Schools Act (S.2860). You can watch the press conference that was held on this here (WMV) or read the Press Release.

Many organizations and coalitions applaud this introduced legislation, Saying that it is a big step for the rights of students across the country. Justice For All Action Network released a statement (Which you can read at ASAN’s site) stating that they were pleased as it has been one of the key components of their agenda. And Families against Restraint and Seclusion certainly see this as a step forward.

However, in the meantime between now and when the bill passes into law, a lot of things could change, and a lot of things are terrifyingly staying the same. Michael E. Robinson* of Parents United For Special Education recently distributed information about a case of school abuse in Cobb County, Georgia involving a 13-year-old Autistic student. For that young Georgian, the fact that people in DC have introduced legislation doesn’t take back the abuse he’s suffered since the May Hearing. Robinson also comments that he believes “it’s a shell that will need to be amended with some strong and heavy additions” and calls for the president to speak on the issue in attempt to get it the attention it deserves.

There is some legitimate Criticism of the bill as it stands now. As blogger Astrid writes in her post, certain phrases are really subjective, such as imminent danger.” This has been a common concern about laws surrounding this issue, especially in Florida where it has been brought up over and over again. Too often, aides interpret situations that are not ones of true imminent danger as such, resulting in an escalation. These false positives are often reported vaguely, and as a result the truth of the incident is left in a he-said-she-said battle.

Another concern is that because the “teeth” of the bill is left to the states, the effectiveness- or even swift implication- of the bill is impaired or even neutered out completely. One of the other issues mentioned in the debates about Florida’s regulations is that the lack of consequences make the regulations useless. The bill states at Sec6(a) that the states will have 2 years to come up with state level regulations that must include enforcement (Sec 6(a)(1)(B)), among other things. My question is what is to happen in the meantime? And while there are measures to prevent them from delaying the process past the 2 years, there are no suggestions as to the minimum enforcement standards.

Another issue that I am worried about is that Section 5(a)(4) will be used to prevent parents from specifying their wishes concerning the school’s policy on the restraints the bill does allow. Sec.5(a)(4) states that Seclusion and restraint my not be written in as a planned intervention into an IEP or other plan. While this is intended to prevent schools from pressuring parents into consenting to Seclusion and/or restraint in a child’s IEP, I fear that some schools might use this to justify restricting the amount of say parents have in mitigating issues with school policy.

Even with these concerns, though, I think that this bill represents a great step forward for all students. Hopefully it will result in fewer students being injured, tortured, or even killed in our schools.

Wright’s Law has not yet posted its analysis, but their post on the bill is pretty good and they expect the analysis post to happen in the next week. I’m interested to hear their list of pros and cons- and hopeful that they will be able to clear up some of my concerns. After all, I’m not a lawyer, just someone who wades through legalese out of fun and need!

I’m also interested in other opinions on the bill as it progresses through the House and Senate, and am curious as to how it will be strengthened- or weakened.

* Please contact me if you get this so that I can link you in and provide readers with more information.
NOTE: if you have links to further commentary about criticism of the bill, please let me know.

Psych Meds and Me

Today, I received a phone call from the office of my Primary Care Physician (some might prefer “general Practitioner”). They asked me if I had an appointment with my psych doctor- yes- and then unleashed some horrific news on me. My insurance- Medicaid/the PA Access card- was turning down paying for my Cymbalta and they thought I should talk to the psych doctor about another medication.

For another person, this might just be poor news. For me, this is horrifying news. Earth shattering, maybe I should just kill myself now and get it over with news. You see, there’s a reason why It’s hard to get me to take certain medications. I was part of the generation of over medicated, pre-teen guinea pigs.

The earliest I remember taking Psych meds Was 4th grade, but it’s possible that I was put on them before that and I don’t remember because we did a lot of herbal medicine (Echinacea, St. John’s Wort, Tea Tree Oil, etc.) when I was younger. (My mom still does herbalism- and Comphrey Salve is amazing.) From then until I turned 14, it was nearly a new med every 2 or 3 months.

On one med they put me on when I was 12, I gained 60lbs in three months. Around the same age, I started having random pain for no reason which I thought was from the weight gain alone. After all, my mother’s second husband was always telling me how horrible being whatever I was was, and that if I hurt that was the reason. Now, over 10 years later, the pain that I brushed aside as being my fault because of my weight has been identified as Fibro myalgia. I have tics that I don’t remember having before those days, though I never mentioned them to anyone and my mother thought they must be voluntary. I was in placements that gave kids Seroquel in order to make putting a ward of emotionally distressed kids to bed easier. I was subjected to any number of medications whose use in minors had not been tested, or at least had not been published.
(I should post another time about the effect of yelling at someone and telling them they are faking does to someone long term. I’ve had it result in not getting even medical treatment until the last minute. Only so many times when you are called a malingerer before you start to believe it.)
When I was 14, I quit taking my medication, and did fairly well- my mother had left her second husband, I had a supportive psychiatrist, and a mom who was into lifestyle management. For several years, I struggled and faught so that I wouldn’t have to be put back on them. I was successful until I had a mental breakdown when I was 18 (My first adult hospitalization; there were 3 in total), when I was on something for a couple of months, again when a year later I was housebound, and again for brief periods during another two hospitalizations. Each time, despite my pleas that it was my anxiety that was the issue, not my depression, I was put on medication designed to treat depression or Mania. Each time, they were failures.
When I lost my insurance, I went a while without medication, and things were bad. I was too anxious to do much of anything by myself. Finally, this fall, I got Medicaid and my mother suggested Fibromyalgia and anxiety to my PCP, and they sent me home with a sample of Cymbalta. While I was anxious about being back on medication, This new medication was different. The parts of myself that I love weren’t blunted, but my General, non-triggered anxiety and the near constant nerve pain was gone. It really was like a magic pill, or the end of a long, hard journey. And one of my worse fears became that they would tell me that I had to stop taking the first thing that had actually worked.
So when the administrative employees at the office that was bought out when my PCP (who I’d had since 4th grade) moved to teach at Duke called, I freaked. I tried to explain that this was it, there was nothing else for me to do, and I was NOT going back through the Hell that had destroyed me as a child. That there had to be something. . . But the employee was horrible, unsympathetic, and insistent that I would have to do the guessing game again. I hung up on her.
At first I tried calling my best friend, but his phone was off. *peers archly in his direction* I tried my mother, but only got her answering machine- where I left a surely unintelligible message between sobs. I turned on glee and tried to watch it, but I barely remember it. One of my cats- Tribble Magoo- came over to me, leaned against me, and started purring at me in an effeort to calm me.
Eventually I called Ms. Janet, my neighbor. Explaining who exactly Janet is is a long story, but she’s in short a family friend with experience with disability issues. Between fits of sobbing, I explained what had happened. She was FURIOUS. you see, in cases like mine where other options have been exhausted, Cymbalta will e paid for as a medical necessity under Medicaid- but only when the doctor does their due diligence.
Now, the new people at the office have lost sight of folks as people, and the new owner really does treat people like case numbers (they also lost my whole family’s medical records dating back to 1996) and a hassle. There’s only one person there who actually listened to me but the amount of power he holds in that practice is limited. In short, that they have become like this is both horrifying and makes the failure to fight for my needs almost expected.
Tomorrow, Janet and I will be finding me a new doctor, and I will be writing a letter to my old practice informing them EXACTLY why I am leaving.
Sadly, there are people who don’t have family and friends to fight for them. Even though I have a lot of change that I am scared of, and lots of tears to go yet, at least I have supportive friends and family.