Needing an Autism Jackpot
Dachel Media Update: Autism? Relax America!

Will Government Limit a Spectrum of Housing Options for Autism?

NB FarmBy Nancy Bernaitotis

As is typical of our government, a ruling meant to protect Americans with disabilities (Olmstead v. L.C. 1999) is being misconstrued to the detriment of this population.  In Olmstead v. L.C., a ruling requires states to “eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate for their needs.” 

In 2009, President Obama issued a proclamation launching the “Year of Community Living” and directed his Administration to redouble enforcement efforts.

The U.S. Senate committee on Health, Education, Labor, & Pensions (HELP) lead by Senator Tom Harkin (D-IA) is charged with this enforcement. 

In May of 2013, Jeff Rosen, Chairperson of the National Council on Disability (NCD), an independent federal agency charged with advising Congress and the executive branch on disability policy, wrote a letter to Shaun Donovan, Secretary of the U.S. Department of Housing and Urban Development (HUD), interpreted the ruling to mean that individuals with disabilities move from provider-owned housing into their own homes or scattered-site housing and apartments, and urged HUD to issue “guidance to recipients of HUD funds on meeting the obligations of Olmstead and the integration mandate of the ADA.”  In his letter, Mr. Rosen seeks to define community living as “utilizing a definition that excludes gated communities, segregated farmsteads, clusters of group homes, settings that restrict personal choice and control, and other settings with the characteristics of an institution.”

The actual ruling, when construed correctly, is meant to keep individuals with disabilities out of NB farm 2nursing home facilities and institutional settings and placed in appropriate settings with appropriate supports.  By creating that definition of community living, the NCD is reducing options for appropriate housing while the disability numbers are skyrocketing.  There simply aren’t enough appropriate housing options or community supports to meet the needs.

The Agricultural Communities for Adults with Autism (ACAA) represents 35 existing or developing farmstead and community living options for adults with autism.  In March of 2013, they wrote a response to Mr. Rosen’s letter to HUD recognizing that the NCD is an advisory, rather than regulatory, body and challenging the NCD’s knowledge of their living models.  In their letter, they “strongly encourage HUD to reject the NCD’s request to issue rigid guidelines that limit (or eliminate) HUD program funding for agricultural or intentional communities and farmsteads for adults with autism and other developmental disabilities.  Our closure would likely result in more of the very same institutional or congregate care placement the NCD claims to abhor.” 

I, as the Executive Director of Good Works Farm, a farmstead community for adults with autism currently in development, also responded to Jeff Rosen:

Dear Mr. Rosen,
As the parent of a 15 year-old with autism, I am painfully aware of the challenges our children face as they enter adulthood, not the least of which is finding appropriate housing and employment.  Your letter to HUD urging the elimination of farmstead communities shows your complete and utter lack of understanding of the needs of this population.  Do you even have a child with autism?  I seriously doubt it because we need more choices, not less

Take my son, Sam, for instance.  Sam goes to Equine therapy every Tuesday after school.  At the barn, he is calm, relaxed, happy, a sharp contrast to the constant anxiety he lives with which causes him to tear off his own fingernails and toenails. 

Why do you see a farmstead community as institutionalization?  It's the least restrictive option I've come across.  If my son lives into his adulthood with us, as 70% of autistic adults do according to research conducted by Autism Speaks, he will self-isolate, meaning, he will do what he does now with his down time, sit on the sofa with a movie and iPad.  If placed in day programs, he would need transportation to-from these locations and transition is a huge struggle for Sam.  His anxiety over transitions caused him to kick out three windshields on our vehicles last summer.  The less he has to transition from environment to environment, the better!
I have worked for Goodwill/Easter Seals and have been in group homes and sheltered workshops.  While they may be a good fit for some, they would definitely not be a good fit for my son.  If there are 4 people in the residential home and 3 want to go on an outing but the 4th does not, nobody goes.  There are few options for recreation on-site so they have to travel to participate in anything.  It is very confining and constricting.  Not to mention the increased risk of provider burn-out and abuse as a result of the isolation.  And since nobody wants a special needs home in their community, these houses are often located in the most impoverished areas of the city.  Not a place I would like my son to live. Do you want your child there?

Have you even been out to visit Bittersweet Farms or any of the other farmsteads?  I doubt it, because if you did, you would see residents with the freedom to move around the property, visit friends in other houses, pursue their individuals interest, socialize, and have meaningful work ON-SITE.  Does this mean they do not interact with the community?  NO!  On the contrary, they are often in town banking, shopping, engaging with the community, attending festivals, movies, bowling, and LIVING LIFE.

A farmstead is NOT an institutional setting, it is FREEDOM for individuals like Sam who need a balance between structure, safety, and freedom.  A group home would not provide this balance.  Interpreting the Olmstead act to include farmstead communities like Bittersweet is a mistake and one that will severely impact the autism community.  Another 500,000 children with autism will be coming of age in the next 8-10 years.  Do you really believe that limiting choices is the right way to handle the influx?  Do you really think that one size fits all when it comes to individuals with autism?  If so, that really shows your ignorance regarding this population.  YOU are segregating and isolating them by not giving them a choice.  If the farmstead model is wrong, why are so many families looking for this option for their child?  WE know our children best.  And I know that Sam would flourish in a farm community.  Please reconsider your stance on the issue and educate yourself before making recommendations for a population you clearly do not respect or comprehend.

Sincerely,

Nancy Bernotaitis

Mr. Rosen’s response:

Dear Nancy - 

Thank you for taking the time to write and describe what the farm residential community means for your son Sam and others. We at NCD have visited a variety of residential settings are always open to educating ourselves further about the experiences of people with disabilities and their families.  

I wish the best for Sam and you. 

-Jeff 

A canned and empty response.

In July, 2013, Senator Harkin released a report entitled “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act”.  This report shows that 14 years later “ADA’s promise of integration is not being met for many Americans with Disabilities.”  It is estimated that a quarter of a million working-age Americans remain in nursing homes today and that number is growing.  The report cites that home and community-based care is what people want and is more cost-effective. We don’t disagree.  What we take issue with is the definition of “community-based care.” It is our belief that more choices, not less, is what was intended by Olmstead v. L.C. and those who are making the decisions to eliminate choice goes against what the American with Disabilities Act stands for.

Mark Olson from LTO Ventures, one of those intentional communities for adults with autism responded in this way:

Senator Harkin is a great advocate for the disabled, but in this report he is wrong. Wrong about what Olmstead means. Wrong about what many disabled people and their caregivers want. Olmstead is about choice. Harkin’s report is about eliminating choice – “…for virtually all people with disabilities, the most appropriate integrated setting is their own home.” This simply is not true for all persons with disabilities. The most appropriate integrated setting is the setting a person with a disability freely chooses from the broadest spectrum of options. Period. This is what Olmstead concluded, and this is what federal and state policy should support. A person with a disability who is eligible for LTSS should be able to use those funds wherever the person chooses. Justification for funding and quality of life and quality of care has nothing to do with the setting…it has everything to do with the civil right of the person to choose their setting and how the setting is supported and operated. Persons with disabilities can be just as isolated living alone in their own homes and victimized just as frequently (with no oversight or protections) as in any other setting. An individual apartment or home can have all the qualities of an “institution” as a badly-run state facility in Georgia. “Community” is what the disabled person decides for himself or herself, not what CMS or NCD or DoJ decide. Even worse, “scattered-site” housing is discrimination…pure and simple. Segregating disabled persons from each other with separation rules and denial of funding is cruel and un-American. Congressional hearings should be held to avoid the fast-tracking of Harkin’s recommendations, to give the broader population of disabled persons an opportunity to express their desires for choice, and to open the minds of federal and state agencies to achieve a fair outcome for all persons with disabilities.

NB brochure inside


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So it seems, while there is a contentious divide on the definition of community living and what it looks like when implemented, it seems we ALL want the same thing: safe, high-quality housing and lifespan services for individuals with disabilities.  Mark Olson is right.  More choices and the opportunity to choose is what Olmstead v. L.C. is about and what the HELP committee should be focused on.  If Harkin’s recommendations are implemented as they stand, less individuals with disabilities will have an opportunity to live in the “most integrated setting appropriate for their needs”.

Nancy Bernotaitis is the parent of three children, her youngest, 15, diagnosed on the autism spectrum.  Nancy has been involved in the autism community for over 13 years serving as president of the Autism Society of America-Dayton Chapter, Goodwill/Easter Seals Assistive Technology Specialist, and webinar moderator for Moms Fighting Autism.  She is the Executive Director of Good Works Farm, Inc., a future farm community for adults with autism where she intends for her son and other with autism to live meaningful, happy, and fulfilling lives. 

Comments

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Lorne Perry

I live Nova Scotia. and started a campaign to have adequate housing constructed for 24 autistic people. My first model was a two story structure built in a horse shoe shape with s single units down in one arm and six up the other arm would be the same they would be connected at one end by common areas down would consist of a kitchen where meals would be prepared and served with tables and chairs where the people could eat. The area could also be for relaxation and games. In the area above there would be one or two apartments for care givers. Those who objected claimed it was too much like an institution. I am going to try to get the parents and autistic people to decide. There would be enough land outside for outdoor recreation.
Lorne Perry,( perry123@eastlink.ca)

Don

I've been suffering with a Group home for high autistic men for four years now. It's driving me insane past the point of depression. The constant noise they make is way to much to place in residential neighborhoods. These people need to be on a farmstead. These guys, don't even have the capacity to understand that they are in a residential neighborhood. That's important because the court ruling was suppose to allow those who want to move to residential to be able. It wasn't suppose to push those out who don't even have the capacity to make that choice. It's a scientific fact that the noise they make is extremely distressing to the human ear. How does the govt determine that people (other neighbors that they place these homes right next to) can withstand this. That's ridiculous. This is way, way over the top for what the ears of middle class Americans should be required to endure, which is hours every week of pure insanity, sometimes screaming, other times just sounding like a wounded goat. This is what they call "verbal stimming", and if you've ever been exposed to it, it's God Damn awful to listen to. If you remember the girl on the plane where the plane stopped because it was too distressing to the passengers. Now imagine Autistic men and being forced to listen to it for 4 long awful years since they placed this home next to ours, and we have to live like this? As far as I can tell, they had everything they needed on the farm stead and then some, and they were perfectly happy, even more happy there. Please, the govt needs to stop ruining lives over political correctness. The court ruling was never intended or should ever be extrapolated to mean you just clear our all the farmsteads and put these people right in the middle of residential neighborhoods for absolutely no benefit to them. Again, they don't even know the difference. I'm researching as I'm going insane at different sensitivities to noises that people have and of various reactions, anxiety, depression, distress, and more, and those noises are not even close in comparison to this. There needs to be an assessment of what type of disorders are appropriate to have in a residential neighborhood, and those that cause a real nuisance shouldn't be. It's just flabbergasting with the amount of money the govt allocates to spend on each one of these people and they place them here. These people get 1-1 care. Even people with severe Alzhimers (the most severe) only get 1-4 care (one caregiver for everyone four residents). To see this kind of money spent and they have to mess up everybody's life too in the process? Jesus Christ.

TamieVOR

Thank you for setting the record straight on Olmstead. One clarification though, the Supreme Court, in its Olmstead decision, is NOT "meant to keep individuals with disabilities out of nursing home facilities and institutional settings and placed in appropriate settings with appropriate supports." Rather Olmstead recognized that individuals have a right to be served in appropriate settings with appropriate supports based individual need and choice - "recognizing on a case-by-case basis, that setting may be an institution," or community based setting, or farm community, or planned residential community, or whatever works for the individual. Olmstead quite simply stands for CHOICE.

Carolyn

Just an FYI.

PBS interview with Harkin which aired on the 7th.

http://www.pbs.org/newshour/bb/government_programs/july-dec13/ada_08-07.html

Folks may want to contact him directly and advise him on current models that are successfully working in your area. We have a farmstead in MI that just obtained accreditation for providing programming options and will be seeking to create a residential option. This site is community oriented, as you will see there is a subdivision of homes that backs up to the site, and there is work being done toward gaining more supports because it's a much better option than a sheltered workshop. Many of the skills learned at Dutton Farms are being transferred and it's a great example of community involvement as well.

http://www.duttonfarm.org/

Carolyn Gammicchia

@ Hera,

I'm all for choice and thank you for your comments. At this point we have a good model in the original intention of Olmstead and if individuals have self-determined and person center planning to assist them, they will have the choices they are deserving of.

I actually have assisted with legislation for this as well as for alternatives to guardianship. Since my brother's death this has been something that has driven much of our efforts as well as assisting others.

Please also do not misinterpret what I've said. I agree that choices are optimal and each of us has a right to discuss what we feel are viable options. As I also indicated, we should be working together to ensure that, not discrediting what others may say or saying that what we feel should be an option is the only option.

We need to realize one thing too....the more inner turmoil our community continues to have show we are indeed not a community overall.

Thanks again and best wishes to you and your family within your indivdual choices.

Carolyn

Hera

Hi Dadadvocate, agree with you.More choices are always better than legislating for less choice.
Carolyn; I'm really sorry your brother was hurt in an institution. Its horrifying to have a family member harmed and everyone wants to prevent that.
The trouble is that no one answer is right for everyone.
Alex S for example was killed while living in an "ideal " situation, with his family. Can't remember the names right now, but another non verbal man with autism killed his PhD professor mother in a fit of anger.
In the news, an autistic man was being kept in the basement by his mother.
Sometimes family members aren't saints or don't have the ability to deal safely with violent behaviors.
Everyone should get as much input into where they live as possible and family members need to be very sensitive to changes in behavior particularly for non verbal family members, and should keep checking whether their family member is being treated well.
However, as is true in everyones' life, sometimes none of us get our first choice of living arrangements. I know one young man with autism who would have liked to stay at home with his family. Unfortunately every couple of days or so he would have a burst of rage and beat his mother black and blue. She had been to the ER with a fractured nose, broken arm etc.
Legislating to give families like this fewer options is mot the answer.
My son has always had a great connection with animals. They don't judge his speech issues and seem to really love him.
I'd love for him to be independent and he probably will be; however if life doesn't go that way for him, farm life may be the happiest option if I get too old to care for him.
I really appreciate that you care so much for all our kids. But please, support legislation for more options, not for less.

Dadvocate

Carolyn - You say you want choice but your long comment says quite the opposite. Perhaps it's only those choices you personally approve of that should be available. I find that stance when I encounter it (which is too often) mystifiying. I certainly don't know what's best for others and don't look to impose my choices on them. Yet some disability advocates seem quite willing and eager to just that via rule-making at HHS, etc.

Limiting settings based on some notion that bricks and mortar impact the risk of abuse is way off base. Neglect, abuses of all types, death, and all of the other horrors you attribute to setting can (and do) happen in all settings, including family homes and independent living arrangements. Given your background as a safety advocate, I trust you'll acknowledge this fact. The best risk mitigation tool is being socially connected and,for some, the best place for lower risk is a more structured setting, rather than say isolation in an independent living arrangement with abusive family members or a cast of frequently changing and lightly vetted caregivers who are paid less than dog walkers for the services they provide. Just saying, Carolyn, it cuts both ways. I think you know that.

The author and LTO are not the ones initiating the proposed changes. The advocates looking to artifically narrow individual choices like farmsteads intentional communities from the menu of options people with disabilies or their families and guardians, like the NCD, ASAN, and other, typically non-autism focused groups, are the ones looking to twist Olmstead into something it's not.

I think we all agree that person centric planning and individual choice is paramount. We are all for that. No one is "sentencing" anyone to anything. That's an inaccurate and irrational scare tactic being employed by the ARC of Michigan and it's occasionally unhinged ED. (Funny that the ARC of Atlanta is at this very moment trumpeting the development of a new campus community and anticipating a big waiting list! Way to be consistent, ARC!)

To your last point, when an individual is judged by society to be unable to make reasonable decisions, guardianship is the method that hundreds if not thousands of years of human experience has developed to manage the affairs of those unable to manage their own. There are many levels of guardianship and a disinterested party, after hearing evidence, impartially makes that determination whether guardianship is appropriate and, if so, the level of control the guardian has over the disabled person's affairs. The guardian reports to the court and voluntarily assumes legal responsibility for their behavior as guardian, knowing it will be second guessed. If you disagree with the application of the instrument of guardianship, then by all means, present your case and let judges and guardians understand how you think the system can be improved.

John Stone

Hi Carolyn

I think if you check again you'll find that the links in your original comment did not get lost. I find on my computer (with my eyes) that the dark blue doesn't always stand out against the black.

John

Carolyn Gammicchia

For some reason the link I had in my post for additional pieces on abuse and neglect in institutional settings did not appear. Folks can go to this link on the Disability and Abuse Project website:

http://disabilityandabuse.org/newsfeed/contents.htm

Thank you and hopefully we can all agree to work together to ensure all options for one's choice for supported community living is obtained no matter the setting. This is a very, very important issue as it will be something that effects our children for the majority of their lives perhaps. We as community members should not be divided about this, epecially after the Jenny Hatch decision yesterday.

Folks may want to look into what is deemed "supported self-advocacy" as well. This case may have some interesting consequences on choices and how those are overseen.

"Woman with Down Syndrome Prevails Over Parents in Guardianship Case"

http://www.washingtonpost.com/local/woman-with-down-syndrome-prevails-over-parents-in-guardianship-case/2013/08/02/4aec4692-fae3-11e2-9bde-7ddaa186b751_story_1.html


Carolyn

Carolyn Gammicchia

Dear Ms. Bernaitotis,

As a parent that has fought very hard for almost two decades to work toward the honoring of self-determination and person centered planning, I do not agree with your interpretation of what is currently transpiring with Olmstead and the NCD’s recent statements. This boils down to choice options, the individual’s, and if that individual cannot make that decision, then most likely a parent will.

So then is that self-determination?

Is that an individual choice option?

No unfortunately it may not be and that is what really should be considered here as well as who will be making those choices after we parents are gone. This too is why Person Centered Planning is so important as well as ensuring our children have a natural circle of support around them to provide what will be needed to for quality of life options.

What I’ve taken from your piece Ms. Bernaitotis is that you want the right to make that choice for your son and it to be supported financially as it would if he was living in a support community living arrangement that falls under what is considered to be an option under Olmstead. I understand too why that should be considered a viable option however at this point your farmstead and Mr. Olson’s venture are in the planning and fundraising stages, so as with the majority of these options, we don’t have a best practice model to show what is working and what is not. Bittersweet Farms has been in operation now for thirty years. Is there model replicable and how many farmsteads are doing so and for how many individuals? From what I know there are only a handful and most are relying on donations and private funding. Your family is very lucky you’ve been able to create a dream of what you feel is needed for your child and move forward with a plan to do so. Most parents cannot do so however, nor can our federal government due to logistics. We also do not have the option of what may be safe oversight of such facilities if they are not CARF certified nor licensed.

What should be realized too is that much more victimization and abuse of one’s individual rights takes place historically in segregated settings. When I advise Mr. Olson of this he indicated I was wrong though he had no statistical data to show me otherwise. Well I know firsthand that I am not and can provide the statistics that show seclusion does breed victimization. As the sibling also of a brother that died due to lack of appropriate medical care in such a setting, I do not want to see that happen to our son nor any other individual living with a disability. Of course your farmstead would be well regulated as you will provide the oversight, however who is to determine if those individuals who may reside in such settings are there because they want to be or it is a personal preference if they do not have a person centered plan to ensure their daily choices are being honored? As someone that has seen much abuse in this area, even down to limiting food to individuals for non-compliance, restraint and seclusion, etc., I feel there is a need for oversight of some means and for such language as it exists within Olmstead. Please also know that as recently as six years ago there was consideration by the HHS to discontinue supports for individuals getting DD services under Medicaid due to definitions of what such care is and the need to show progression for individuals getting such supports. Many national organizations and advocates fought to keep these services with the intent to ensure that quality of life was continued for individuals who depend on such supports.

Additionally what Mr. Olson is suggesting in his model of a residential option will also be a setting that many individuals with autism may not seek. I know our son, who is now twenty two, most likely would not because he chose as a child to seek general education placement rather than special education placement. That however was his choice and he knew too that he would have an expectation in that setting that was different, but one too that would be what would allow him a path to assimilate within his community. The community too that he would choose ultimately and is still learning to navigate. Please also do not indicate that there are individuals with more significant disabilities that cannot be self-determined individuals. In the majority of cases individuals with disabilities make choices each day for this food, clothing, environmental preferences and many other options. It is us often who do not see that as there voice, their choice, and even if they are not able to speak, their behavior will communicate that preference in many cases.

I also realize that many parents want a safe and accepting living arrangement for their loved ones living with ASD, however please realize that this will cost you financially because if your child does not have a Medicaid waiver as a child, the chances of them obtaining one as an adult are very slim due to long waiting lists for residential placement options. This is why it is essential for parents to get involved, work toward systems change, and ensure your child has the supports needed to allow for choice options whatever those may be. Currently we have hundreds of thousands of individuals with disabilities on waiting lists for services across this country. Are folks worried about those people within this discussion? If not you should be, especially if your child currently does not have a waiver because they will not qualify for the adult supports needed to provide them residential options outside of their home and if they do, they most likely will be placed on a waiting list for residential consideration. These placements, like the one proposed by Mr. Olson, will cost the federal government quite a bit to provide such a support. At this point also we don’t have much research to show such segregated facilities, even if by choice, are leading to fulfilling outcomes for the individuals living within them. Until then there has to be a consideration also of where could such facilities can be built, who will pay for them, and who will regulate them? How too can we not be sure these are not developed into for profit entities that will not provide what is deemed necessary under person centered planning? As for the wave of individuals that will be here in need of such services, that hit shore almost five to ten years ago and it seems like folks are just beginning to notice this more as their children enter into adulthood and they see the long lines for direct support services before them. No, these waiting lists have been here for quite some time and autism is not the only disability that is affecting those waiting for many types of services.

As a parent that has worked very hard against deinstitutionalization in our state and on a federal level due to my brother’s death and the death of many others in such settings, I am not convinced that these alternatives are best options nor do I feel that changing what has been done via Olmstead is what is right either since Olmstead has yet to be realized fully in many states where institutions still exist. Additionally I would urge parents to become involved within the policy making that takes place in your states and have living options such as farmstead communities or transition programs for employment be developed to ensure individuals with disabilities are being properly supported to obtain what is an individualized education plan. Also work toward an appropriate natural circle of support for your child to allow you as a parent to have peace of mind in knowing that after you are gone your child will be supported by loving and caring individuals well invested in their lives.

I would also like other parents to know that if your child does get funding via a Hab. Waiver supported community living is possible. They can have 24/7 staff, also community living support staff, a person centered plan that will provide for everything from going to a local gym daily if desired to choosing specifically what they want to eat. Additionally this choice of living arrangement can be made within an area that is safe, has access to transportation, and provides access to what activities, secondary education, or employment options your child may want to pursue. Yes this too is possible for the majority of individuals living with autism, no matter where they are on the spectrum.

Please also know that this reaction on a national level, and individuals like Mr. Rosen, may come from stories of abuse and exploitation that still happen quite often in the U.S. like this horrific case out of Iowa where twenty one men with disabilities were used as laborers in a farm environment. Recently these men were awarded a multimillion dollar settlement via the EEOC’s action on their behalf due to them not being paid for decades. Or the cases out of California and New York in the last year that show terrible treatment in state facilities. (More media links about such case can be found in a newsfeed here: http://disabilityandabuse.org/newsfeed/contents.htm) What is needed is for it to be shown that these proposed settings be viable options that are providing community based living and choice within self-determination. That actually would be very easy if guidelines are followed that are not restrictive currently in nature. I know because our son’s PCP allows for much choice and many innovative options under his self-determination contract. These types of stories however are what lead legislators to be cautious. For someone like myself, I’d also like to see successful programming and outcomes from such supports before I place a stamp of approval on them and request a change of what Olmstead is bringing.

“Texas farm that employed, hired out mentally disabled men for decades faces more scrutiny”
http://www.cleveland.com/nation/index.ssf/2009/06/farm_that_employed_mentally_di.html

“California facilities put disabled at risk, audit finds. California facilities for the developmentally disabled follow outdated policies and fail to act on reports that residents have been raped, shot with stun guns or otherwise abused, audit says.”

http://www.latimes.com/news/local/la-me-abuse-disabled-20130710,0,1014074.story

If you and Mr. Olson were to achieve what you want in these changes it would be going backward in what many of us have been trying to accomplish for decades. Additionally there would be no means to ensure individuals who were wards of the state were provided the options you both are seeking for your children. Look at what has happened with the Iowa case, men who were wards of the state of Texas, as well as many individuals still in institutions and group homes across the country who are suffering daily due to inadequate care. If you’d like to read additional stories on that please go to the

Lastly I’d like to express my appreciation to both Nancy and Mark for this conversation, however please know that there are other options and Mr. Olson’s LTO Venture’s has yet to be realized so I’m not quite sure how we can put our support behind something that is not a viable option nor has shown it’s what is needed by the autism community. Much of what is being proposed there can be done within well defined transition plans for our adults in age 18-21 educational support settings via their IEPs. It is happening and it is also happening in some two year Think College CBT programs across the country. So please parents, think about all of the options and look too at your child’s individual preferences. Please also look at what programs like TEACCH in North Carolina have done to enhance education for individuals with autism in their transition years and how their Carolina Living and Learning Center (http://teacch.com/CLLC) has been an example for many communities across the country. TEACCH also has an inclusive model approach that is respectful of personal choice and if your child loves gardening, horseback riding, etc. a farmstead may be perfect. Overall however this comes down to choice options as Mr. Rosen pointed out in his statement. This also should not boil down to the have and have nots as we are seeing now across the country for services. This comes down to self-determination and appropriate person centered planning for all individuals with disabilities as well as planning well in advance in educational settings for appropriate transition services as a child enters their teens years and even before. We all also want to know when we are gone our children will be safe within what has been planned for them and each can lead fulfilling and choice driven lives. However the final determination comes down to what we as parents can live with too within our choices for our children and no one really has a right to say what that should be, especially since each of our children is as different from the other as are those who aren’t living with autism. I also felt the need to provide such a detailed response because I don’t want parents thinking that choices are not being honored, they are, and that is why many fought to ensure Olmstead has stayed intact and is appropriately interpreted and enforced for decades.

Respectfully,

Carolyn Gammicchia
Nick’s mom and Mark’s sister

Dadvocate

Mary - The choice limiting policy that results from your non-sensical definition of "institution", will deprive individuals of their right to live and associate with whomever they, or their legally appointed guardians, freely choose. That is wrong. Why should the government be able to say, "The people with disabilities you know and want to associate with may be your friends, but because you and they both have a disability, you can't live together in the same setting, or even in the same neighborhood or vicinity. And don't even think about working from home or having employment or day programs conveniently available where you live or you'll lose all your funding"
Your and my definition of what constitutes a community or institution are very different...as is most everyone's. In addition, the Feds and traditional old school broad developmental disability (Down syndrome, ID) advocates they fund (like the ARC, NCD, etc) are pretty much in denial and/or clueless about the needs of the autism communty. They share your inaccuate definiton of institution. For some, a mandate to live independently and alone (for example, those with severe behavioral challenges) will mean forcing them to live in near total isolation inside a city or suburban apartment or house. Isolation and community can occur in all settings.

The choices that people with autism (and their legal guardians, where appropriate) want are wide ranging and do include agricultural communties, which offer those who want this option, safe, affordable housing, full and meaningful employment and strong non-urban community integration. Other intentional and faith based communities are also highly appealing to some with autism. Just because these aren't your preferred choices doesn't mean you or anyone else, including well intentioned but misguided and out of touch advocates should have the power to control those options. Options which, for some, may even include...and should include...larger scale congregate facilities like Misericordia in Chicago (though that's not my personal preference). Olmstead backs choice if you read it without an ideological filter. Choice and self direction should guide policy.

Benedetta

HUD!
How did you two get this arrangement?
What did it take, who did you contact?
So HUD is putting out some some money?

Mary and Martha (you two sounds like the Lazurus sisters-- sorry poor joke) are you putting out money from your own pocket as well?

Benedetta

Mary;
I am ignorant.
Please tell me about what you know of farms - back in the day?

Martha Moyer

My 40 year old son with minimal communication ability and moderate to low in his functioning lives in his own apartment; has section 8 HUD funding; a live in companion care person and a day worker who takes him out in the community daily. He helps shop for his own food and recreates and learns about his world while in his own community.
An institution ruined his bowels due to neglect in one of their group homes that were scattered about in the town. I have even become his Home and Community Based Medicaid Waiver provider agency and I have saved his life because he was SO neglected in the group home and his toileting needs were neglected. So I say that community options are not just for the high level individuals. They are for everyone and it is up to us to create the right settings. I just wish the funding here in Texas would support what I am doing. The emphasis is on group homes and people staying with mom and dad until they die and then what? We never seem to close the numerous state institutions...we just rename them as developmental centers. It is expected that the adults go to some daycare or day habitation center. Mine slept in a daycare for 8 years. I worry about what will happen when I die...I am age 75. There is no money available to train someone to take over when I pass on. It all goes to institutions that we refuse to close!

Mary E. Ulrich

Any residence that has more than one or two people living together is an institution. These farms and other large facilities are exactly what the parents of people with disabilities in the 1950's thought would keep their children safe. Look what happened.

Adults with disabilities can live in homes in the community. My son, with autism, lives in a home owned by a non-profit and gets HUD support for rent. It is in a neighborhood close to his parents. He usually has only one other roommate.

Do not get sucked into thinking farms are better--they are institutions, plain and simple. There are more than 10% of the people with disabilities in the neighborhood. Segregation-period!

Bob Moffitt

There are two things that really trouble me about this particular AoA article .. titled .. "Will Government Limit a Spectrum of Housing Options for Autism?".

The author .. Nancy Bernotaitis .. comments:

#1 .. "Another 500,000 children with autism will be coming of age in the next 8-10 years".

Nancy is speaking about my .. god bless him .. loveable .. thirteen year old .. "non-verbal" .. "Elmo fixiated" grandson .. who is just ONE of those 500,000 children .. that will be .. "coming of age in the next 8-10 years".

Where were these 500,000 children less than ten years ago?

Obviously .. wherever they were .. they can no longer be ignored .. because .. they now represent a serious financial cost (burden) to our federal government.

#2 .. "Jeff Rosen, Chairperson of the National Council on Disability" is .. when all is said and done .. is a "bureaucrat" .. whose salary and advancement does not rely on what is best for our children .. but .. what serves his own self interests .. which requires he "reduce costs" by any means.

Holly B

@Mark Olsen, what can we as parents do? Can we write CMS? Can we write/call Harkin? What is your best recommendation for getting the community voice heard?

Mark L. Olson

The root of the misinterpretation of Olmstead begins soon after the ruling with the DD Act and creation of its network member agencies. Because their existence and funding are tied to this Act, until we can establish a more enlightened and educated interpretation in law, the rule-making process will continue to arbitrarily limit options and reduce choices.

Adults with disabilities, their families and caregivers, providers, and increasingly members of Congress are speaking in a loud, clear voice about their civil right to choose, and being systematically overruled by CMS and government agencies who have decided they know better.

The rule-making process should produce an outcome that expands choices, supports disabled Americans’ right to choose, and removes barriers to innovation of and investment in residential settings desired by adults with Autism Spectrum Disorder and other disabilities.

We implore CMS to cease-and-desist its efforts to impose its bias on disabled Americans and instead we encourage CMS and DD Act network agencies to let the market decide which settings prosper.

1. Expand Choice, Encourage Housing Innovation. CMS should be focused on expanding opportunities for, and removing barriers to, development and construction of innovative new housing settings including, but not limited to: disability-optimized mixed-use campuses, farmsteads, home clusters, and disability-optimized urban redevelopment projects. BTW, we also are big fans of persons with disabilities living in their own homes and apartments if that's their choice. There must be a full spectrum of options.

2. Focus on the Person, Not the Setting. We strongly urge CMS and US HHS to cease-and-desist their counter-productive efforts focused on defining what an eligible setting is NOT. We urge CMS and US HHS instead to focus their efforts and resources on programs such as Money Follows the Person to ensure that disabled Americans receive the federal and state funding for which they are eligible based on their disability rather than as determined by the setting in which they choose to live. This also means enabling true Medicaid funding portability across regional center jurisdictions and state lines.

3. Competitively Compensate Direct Care Professionals. The average hourly rate of pay for a licensed Direct Care professional in Nevada is $8.50. These dedicated professionals are responsible for the care and quality of life of disabled Americans, yet they are paid less than a high school student working at Starbucks. Staff turnover in many states is more than 50 percent annually. More and better trained care professionals are needed to meet the growing demand, but this can only happen is Medicaid compensates them at a competitive rate and living wage.

4. Encourage Private Financing and Public-Private Partnerships. CMS should be expanding opportunities for, and removing barriers to, development of and access to private financing and public-private partnerships that would offset, complement or replace public funding. Doing so would accelerate development and availability of residential settings that would reduce waiting lists, create jobs, improve pay and provide higher-quality services.

5. Eliminate Specific Language. At a minimum, the language contained in this entire paragraph in CMS-2249-P2 must be eliminated from this and future CMS efforts to revise Medicaid regulations related to residential settings, for all the reasons stated above:

"Any other locations that have qualities of an institutional setting, as determined by the Secretary. The Secretary will apply a rebuttable presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex."

Benedetta

I also notice that once again Jeff is another arm of those many "Fed agencies"

Gee the more I think about it -- I see Jeff Rosen is from some federal agency who is suggesting to another federal agency how they should handled this situation.

Not really again that too is how my family got into trouble, and that was with a bunch of federal agencies dictating vaccines as those behind them, between them, within them-- made good money off of profits.

I forsee that in the future there will be a good industry that pops up from the housing and care of our children. Agencies running them with people behind them, between them, among them makes good profits.

Benedetta

I guess as long as we have the money we can do as we wish-

The problem comes in when we have to get the money from the government. Once we do that, then a small set of people (within the government) can use that as a carrot, to makes everyone follow strict set of narrow rules, everybody squeezed into one shoe fits all.

Gee that was the problem way back when our founding fathers of the United States "states"
wanted to

Hmmmm, that sort of sounds like how my family got into trouble to begin with too- when it came to the vaccines. . One size fits all.


I

Benedetta

That is true Kim - you have three.
I don't know how much your state gives a disabled person that never worked, but my state gives 5,000 dollars a year.

It is not easy to get either.

But if you go through about a decade of getting it that would be 15,000 a year from the state.


That is why I dream of the lottery, and from reading your book -- you apparently do too.

Holly B

You can thank folks like Ari Neeman and other NDs for this. They actively fight against Farmsteads because they wouldn't choose it for themselves. Fortunately for them, though, they have that "no longer in the DSM" kind of autism that allows them to navigate the working world. Bully for them. For the majority of our kids, however, they cannot get and sustain meaningful employment in the marketplace for various reasons and a relaxed, quiet, humane living situation like a farm is the ideal situation for them. Shame on these people for limiting our kid's choices just because they don't want them for themselves.

Vicki Hill

Nancy, thank you for this article. nonPareil Institute hopes to create housing options - choices - for the medium to high functioning adults with autism in our program. We talk of a college campus model: some people at colleges live in dorms, with relatively high levels of services. Others live in individual apartments on-campus or nearby. And others commute from their own homes elsewhere in the community. The essence of the Olmstead decision was choice...but the regulations have taken away choice and replaced choice with the federal government's definition of what people 'should' want.

My 25 yo son with ASD should be able to make HIS choice as to how he wants to live. His preference would be to live in an apartment, with roommates, in a complex where many of his friends with ASD live upstairs, downstairs, or right around the corner. He doesn't really care whether neurotypicals also live there; he likely won't choose to interact with them too much. So why does the government insist that he would be better off living with lots of neurotypicals nearby (ignoring him), while his friends live blocks or miles away and he can't visit them because he doesn't drive? He should get to choose...not the government.

John Stone

I recall having to spend the period in 2000-2006 in the UK fighting doctrinaire educational inclusionists, who were often even trying to criminalise parents who tried to stand up for their children's special educational needs. I think the British disability community owe a great debt to Maria Hutchings who had the courage and determination to ambush Tony Blair in a TV studio before the 2005 General Election. After the election Maria was taken up by David Cameron (then Shadow Secretary of Education) and even New Labour seemed to back-off this ideology.

Subsequently, Maria was treated abominably by Cameron and the Conservative Party but she achieved a great deal more than most politicians ever do in bringing to an end this brand of PC viciousness.

Stagmom

Nancy, thank you so much for this post. Since the epidemic explosion of the early 1990s, educators, therapists and a tiny sliver of astute doctors have realized that autism does not fit into any tradition special needs services. NONE. That's why we have autism schools. Autism Day at Six Flags. Autism friendly movies. Autism speech therapists. Autism summer camps. Autism medical specialists (25 and counting!) Our school district is just NOW creating a special gap year program for autism - because the traditional special ed 19 - 21 program will not possibly work for the students with autism. And my oldest is the FIRST to go through this program starting in the 2015 school year. Housing should be the same - the traditional options will not work for everyone on the spectrum. And a handful of Aspergian "leaders" who can't understand one aspect of my kids' lives should have ZERO say in policy. Fortunately (insert tongue so far in cheek it pops out your butt) we ARE a group home so housing issues will be easy for the Staglianos.... Kim

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