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.

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/

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.

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

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

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?

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!

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.

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."

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

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.

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.