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« Dachel Media Review: Insurance Costs, Jenny Bashing | Main | Dachel Media Review: Airport Autism Test Run, Fight for Rights »

Meet VOR: Refuses to Redefine Choice Imposed by Autism Self-Advocates

VOR logoManaging Editor's Note: We are pleased to welcome VOR as a new sponsor of Age of Autism. As our children are growing older, we are looking a a plethora of new issues related to aging out and beyond. VOR will help us navigate Community Resources, Special Education Resources, Legal Resources, Medical Resources and offers a Toolkit for Families. Please like VOR on Facebook, follow them on Twitter, bookmark their YouTube page and follow them on LinkedIn.

By Tamie Hopp, VOR Director of Government Relations & Advocacy

I am delighted to have this opportunity to introduce you to VOR, an organization that is really like none other.

VOR is a national, nonprofit organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

We are the only national organization that has not redefined terms that other disability advocates have hijacked, like “choice,” “community,” and “self-advocacy.”  

Does Ari Ne'eman, a self-proclaimed self-advocate really speak for you?

For 30 years, VOR has remained true to the families we represent by putting their seasoned insights and perspectives first. To us and them, “choice” really means choice. Our advocacy is driven and guided by an undeniable truth: Families know best.

To get to know VOR even better, we are offering a complimentary e-subscription to our publications through June 2015, no strings attached, including our weekly VOR E-News Update and our newsletter, The Voice, published three times a year.Just send your email address to info@vor.net with your request. Your email will never be shared or sold.

You will find VOR unique and refreshing in this day and age of advocacy. We respect individual differences, and reject “broad brush” policies that apply to most individuals with disabilities, but not all.  In our view, such an “all or nothing” approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk.

VOR’s advocacy – our walk to support our talk – is carried out at the state and federal levels by an army of members and volunteers, the vast majority of whom have family members with profound cognitive disabilities.

In state houses, court rooms, Congress and the media, we are doing all we can to help change the conversation away from ideological notions of what is best for all people with developmental disabilities, to what each individual needs.  We challenge laws, seek reforms and help families. 

In short, VOR is doing all we can to answer what “Autism Daddy” says is the question many parents of autistic children and adults are afraid to ask, “Where Will He Live When We're Gone?”

VOR demands realistic answers to this question by working to ensure that the system is responsive to all needs, and challenging efforts at all levels, including our federal government, to eliminate specialized residential, vocation, and support services. 

The need is significant. 3.5 million people with I/DD and autism are living with family caregivers (many who are elderly), there have been less than a quarter million out-of‐home residential opportunities funded in nearly 20 years,  and 268,000 Americans with I/DD are on waiting lists for services.

Does it make sense to eliminate specialized service options for people with profound needs because of someone else’s notion of “inclusion” and “community?”

A public exchange in EP Magazine (December 2013) between two advocates illustrates just how polarizing this debate has become – and how (alarmingly) the individual is ignored by federally-funded advocates. Here, VOR’s Geoff Dubrowsky, who is also a father and uncle to three family members on the spectrum, and Alison Lozano, the Executive Director of the federally-funded New Jersey Developmental Disabilities Council, offer their perspective of “diversity” based on individual need and choice:  

Alison Lozano: “Everyone must live alongside everyone else in a regular neighborhood, enjoying their community to their fullest extent. This is what is called diversity.”

Geoff Dubrowsky: “Living in ‘regular neighborhoods’ is a nice image, but what’s ‘regular?’ Some of us live in homes in the suburbs or in the hearts of cities; others live in condominiums, apartment complexes and college dormitories; and others choose to live in retirement or gated communities. Like the rest of us, people with intellectual and developmental disabilities will choose and need different living arrangements. They should not be relegated to someone else’s notion of what’s ‘regular.’”

VOR’s vision of the world puts individuals and their families in the driver’s seat, not federally-funded advocates or even “self”-advocates that attempt to speak for you and your family.

VOR is 100% privately –funded, supported entirely by our members, primarily families like you. 

We invite you to learn more about VOR at www.vor.net; and don’t forget out our complimentary subscription offer (to get signed up, send your request to info@vor.net).

The more families we have speaking up in support of individual rights, family rights and common sense, the more successful we will be.

 Tamie Hopp is VOR Director of Government Relations & Advocacy

Comments

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I applaud VOR for recognizing the benefits of institutional care for some people. My son Anders’s best years were those he spent on the children’s unit at the Massachusetts Mental Health Center, and later at Westborough State Hospital. Now the state institutions have been closed, and he lives in a really dreary “community” group home with alarms on all the doors.

Anders had a workshop job at Westborough. His favorite assignment was assembling bird feeders for the Opus Garden Song Company. I will never forget one Christmas shopping trip we took to the Westborough mall. As we walked in the door at the old Caldor’s store, there were the Opus Garden Song feeders on display and suggested as a great holiday gift.

“That’s my work!” Anders exclaimed.

What greater satisfaction can anyone feel, seeing that what they have worked on is something that other people will want, and will pay money for?

Anders was 40 years old in 2003 when he was discharged from Westborough to the group home for mentally ill men where he still lives. During the week the men go out to attend a day program, but weekends are dismal, especially in the summer. One cigarette every hour on the hour, on the back porch, is the only scheduled outdoor time.

I have tried to request a smoking cessation program, but am reviled by staff for making such a suggestion. I have been equally reviled for suggesting that Anders participate in some sort of supported work program.

“He’s not ready,” I am told.

I decided to put Anders to work myself. This was also a way to get him out of the house on beautiful summer weekends. His job for me is to write, and we have now written two memoirs together. These are ebooks, available for Kindle or Nook, at http://tinyurl.com/d3hqlye or http://ow.ly/9ZLr8.

Roger, you make some great points. I am so glad we have someone like you advocating for kids with medical problems (including many with the autism label). Best of luck in this effort!

I am tempted to et on the VOR email list,but after doing over to their web site,and doing some reading,I can some reading,I can see VOR is mostly eared towards the intellectually disabled,and believes in keeping institutions as an option for these people.

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. We support the expansion of quality community-based service options; we oppose the elimination of specialized facility-based (institutional) option.

http://www.vor.net/about-vor

I have been a member of the ARI Yahoo group for the last seven years.We have two parents children in the group who have children in their 40s and early 50s who have severe autism and intellectual disability.Both have serious,lifelong medical problems they have never gotten a proper workup for.These parents have shared all kinds of horror stories with the group about one health crisis after another their children have gone through,and not only either nearly die,but regress to the point where they lose skills,like toileting.Neither of these adult children are in places where they get autism appropriate diets,like GFCF.One parent shared the story of how their child got very sick from the food at the home,stopped eating for a very long time,and only got sicker.The parent took the child home,and slowly nursed them back to some degree of health.Then took them back to the residential treatment center.

VOR seems to not want to address the fact autism is as much of a medical disease as it is anything else.A trait they share with Ari Ne'eman.In some ways they are still stuck back in 1983.I see nothing there about the possibility that a cause of the autism might be found for some of these people,and with enough treatment of the underlying condition,these people might be able to live on their own.

I have posted links to my story often enough,so some of you should be aware of it.I have been found to have Cerebral Folate Deficiency Syndrome,and Severe MTHFR Deficiency,with a ridiculous number of medical problems and regressions.I was never intellectually disabled.I fit the profile for metabolically caused autism perfectly. http://www.vsan.org/rok-az/misc/Metabolic_Geneticist.pdf
But even so,my autism was severe enough for teachers,and doctors to want to put me in a residential treatment center of some kind for the rest of my life.Which is just where I would have ended up,after my mother died,had I not been far enough along in my recovery.

I have spent a ridiculous amount of time in the last seven years learning about all of the medical problems that can present as autism.I have found I can be very helpful to parents.And above all,I have gotten a treatable medical diagnosis for my autism,through sheer self advocacy beyond what most people ever dream.

It finally dawned on me as I was reading this,there are not enough self-advocacy groups.Autism is such a big thing,that covers so many different types of conditions,no one group can cover it all.VOR may be fine for those with intellectual disability,but it is not much help for someone with severe PANDAS or propionic acidemia.There isn't a parent here who doesn't agree about how hard it is to find dotors,schools,social activity groups whatever who understand the diseases that can present as autism.In a medical crisis this can be deadly.I would be very interested in starting our own self advocacy group.Just for families that have gotten a confirmed medical diagnosis for their autism,but I have no idea how to go about doing it.There is no place better than AoA to both get families and individuals interested in joining up,and possibly find someone who could help get the group off the ground.

Thank you so much for the information about VOR. I have just requested to be on their e-subscription mailing list. I wish I had known about this organization before my son, Conrad, was prescribed Thorazine 500mg 3x per day, which led to his death in a group home in 1995.

I read some of the stories they have posted online. The story of Edwin’s discharge from a large state facility to a community group home is so similar to that of my oldest son. He lived in a beautiful cottage on the campus of Westborough State Hospital, but was discharged to a “community” group home 11 years ago. The group home has alarms on all the doors. My son has run away twice. In 2009 he was missing for 7 weeks and 2 days. He now wears a Lojack bracelet. I also got him a cell-phone, which he loves, and it also has GPS.

Meanwhile Westborough State Hospital has been closed, and the Massachusetts Department of Mental Health (DMH) case manager for my son has told me that DMH will no longer be able to guarantee housing for all “consumers.” Couldn’t my husband and I, in our 70s, consider having him come home to live with us?

And, thank you Kim, for closing the “conversation” with self advocates. Talk about federal waste, the last IACC meeting was a shocker. Dr. Insel stated that diversity, not disability, should be the focus of that disgraceful committee.

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