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Opinion / Viewpoint

Adults with disabilities deserve right to choose where to live

by  /  2 May 2017
The Expert:
Expert

Amy S.F. Lutz

Writer

In two years, my oldest daughter will go to college and move into a dormitory with other students. My mother loves her gated retirement community. My son, however, can’t make a similar choice to live with his peers. Jonah, now 18, has severe autism and is part of the only group of people in the United States denied the basic right to choose where and with whom to live: the intellectually and developmentally disabled.

An increasing number of states are refusing to fund large residential communities that are specific to disabled people — despite the popularity of these models both among people who want a readily available social network and those who have medical or behavioral challenges that require extensive support.

Sounds like a case for the American Civil Liberties Union (ACLU), right? What’s baffling to me is that the ACLU supports these housing restrictions. ACLU officials maintain that large communities designed for people with disabilities are isolating and tantamount to unlawful segregation. I think they miss the point.

I am a member of a nationwide coalition of more than 30 organizations, representing tens of thousands of adults with intellectual and developmental disabilities, and their families. We wrote a letter to the ACLU explaining why people with intellectual and developmental disabilities need a broad range of housing options to reflect their diverse needs and preferences. But ACLU’s executive director Anthony Romero wouldn’t even grant us a meeting.

The idea that one residential model is appropriate for the entire spectrum of intellectual and developmental disability — from college-educated self-advocates to profoundly impaired individuals at risk of detaching their own retinas or bolting into traffic — is patently absurd.

Legal limits:

At the center of this issue is the ‘final rule,’ issued by the Centers for Medicaid and Medicare Services (CMS) in 2014, to specify the types of residential settings in which individuals with disabilities can use their Home and Community-Based Services ‘waivers.’ These waivers — paid jointly by state and federal government — cover the cost of housing that would otherwise be prohibitively expensive. (We expect Jonah to require more than $200,000 a year once he leaves home.)

CMS initially set no size limits or density restrictions on the residential settings in which people can use the waivers. According to a 2014 fact sheet, its rule followed an “outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.” This indicates a focus on results — such as whether waiver recipients are happy and safe in their homes — rather than what those homes look like.

However, as the states prepared to comply with the final rule, CMS seemingly forgot about its focus on outcomes. It issued a new document that called out farmsteads, disability-specific communities, campuses and clustered group homes as potentially “isolating” to disabled individuals, and thus at risk of losing federal funding. Several vocal self-advocacy groups, such as the Autistic Self-Advocacy Network, also issued statements demanding that public funds be used exclusively for small, dispersed homes in the community rather than on these larger settings.

As a result, a number of states — including Delaware, New York, Pennsylvania, Massachusetts, Oregon and Ohio — proposed policies that effectively ban residences that serve more than five or even four individuals. The ACLU has publicly supported these restrictive rules. It has also opposed the current administration’s plan to indefinitely postpone the deadline, originally 2019, by which states must implement their plans.

Fundamentally human:

As our coalition wrote to Romero, “The desire to live with peers is fundamentally human.” This isn’t the projection of deluded parents: A 2013 Autism Speaks survey revealed that nearly 30 percent of people with autism prefer to live in a planned community.

In his response to our letter, Romero warned us that he regards such “segregated” settings with great suspicion. He added: “Indeed, federal law and Supreme Court rulings support our position. Both the Americans with Disabilities Act and the Supreme Court’s 1999 Olmstead decision view the unnecessary segregation of people with disabilities as a violation of their civil liberties.”

Romero’s statements misrepresent these landmark decrees, however. Olmstead requires states to provide integrated settings when “community placement is appropriate” and when “the transfer … to a less restrictive setting is not opposed by the affected individual.”

In fact, the justices expressed concern about this exact misreading of their decision. In his concurring opinion, Justice Anthony Kennedy wrote, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act … to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

In his letter, Romero further claimed that research supports his opposition to large group residences. In truth, the literature examining residential size is inconclusive. “There are remarkably little data available to support which housing options work best for which individuals,” says David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania. “The largest challenge to conducting rigorous research on housing is disentangling the severity and needs of the individual from the housing option in which they are placed.”

Push-button locks:

Jonah has a tested intelligence quotient of 40 and a history of challenging behaviors, including dangerous aggression and self-injury that precipitated a 10-month hospitalization when he was 9 years old. He has run away from our home so many times that we now have push-button locks on our doors that require a code to enter or leave.

My son isn’t alone. The 2013 Autism Speaks survey revealed that more than one-third of individuals with autism require 24-hour supervision.

Some adults with disabilities and their families are attracted to large, disability-specific communities because of their social benefits. But others — like Jonah — need this option, as they require more support than can be safely and consistently delivered in dispersed settings. One of my greatest fears is that when my husband and I can no longer care for Jonah, he will end up in his own apartment with a minimally paid, minimally trained aide who will let him stim on his iPad all day rather than risk taking him out.

Good housing policy would take his needs — and those of all others with a disability — into consideration.

Troubling paternalism:

Throughout its history, the ACLU has protected the freedom to exercise fundamental rights — even if those choices are not ones that most ACLU members would make. Over the past century, its actions have involved defending the Ku Klux Klan, confederate flag license plates, and the homophobic and anti-Semitic Westboro Baptist Church.

The refusal of the ACLU to defend the rights of adults with disabilities and their families to choose from the same range of residential options enjoyed by non-disabled Americans is not only a shocking departure, but a troubling display of paternalism. The doctors who founded the first public institutions in the 19th century believed they knew what was best for people with disabilities, too.

The ACLU has embraced a fundamental hypocrisy. In his reply to our coalition, Romero wrote that individuals with disabilities should have “the same choices and freedoms as others.” Yet in the same letter, he reiterates the ACLU’s support for policies that strip this population of those liberties.

As we explained to Romero, “The right to choose is meaningless if every option but one is taken off the table.”

Amy S.F. Lutz is a writer specializing in issues affecting those with severe autism and other disabilities.


  • Alison Singer

    Frankly, the ACLU’s position isn’t surprising, given that its primary adviser on this issue is Ari Ne’eman, the founder of the Autistic Self Advocacy Network. That group claims to speak on behalf of all people with autism, but neglects the most disabled end of the spectrum, lumping them in with all people with autism and claiming to know what’s best for them. They may share a diagnosis of autism, but they do not share the diagnosis of intellectual disability. We all bristle at the term “institution”, but we should not eliminate the option of residential settings simply because some of them may be bad. Some are the absolute best option for people with severe autism and ID. After having been through 8 schools, varying from mainstream to self contained, my daughter is now at a residential school for people with autism. She is happier than she has ever been. For the first time in her 19 years she has made a friend; another young woman who lives in her house and shares her disability. She seems to prefer the company of people who share her IQ level, and share her interests in puzzles and animals. They enjoy watching Disney movies and playing games on their Ipads. She requires 24/7 supervision in case of seizures and elopement, and this is only affordable if there are 5 women living in the house, pooling their resources. She should be the one to choose what is best for her. Why doesn’t the ACLU want to protect her civil rights?

    • ia

      Have you met all of ASAN’s Board and Staff? Have you read their records to verify that none of them have ID?

      How many autistic people are there on the ASF Board?

      HCBS rule wouldn’t stop your daughter and her friend from living together.

      • MomtoTom

        @Alison Singer’s comment “HCBS rule wouldn’t stop your daughter and her friend from living together.”

        WRONG – In some states the maximum number of disabled allowed to live together is 3, some 4. For many of the others, including California, the jury is still out. Although California’s State Transition Plan that was submitted to CMS purposely left off a disability maximum. We will see if CMS approves or requires a disability maximum.

        • MomtoTom

          Whoops, not @Alison, but @ia.

    • Emily Willingham

      This is a misrepresentation of the ACLU’s argument, and I think that the ACLU should weigh in here. I have asked them to do so and will push for that.

      • Denise_M_Lombardi

        Thank you Emily for personally inviting the ACLU to this discussion.

        Dear ACLU – there are MANY families, including my own, in agreement with the points raised by Amy Lutz. We may not be heard from as often as those in opposition to choice in housing but we do exist.

        The arguments succinctly put forth by Amy finds little opposition among the larger majority of caregivers. These caregivers are acutely aware of the steady march of time and the inevitability of their loved ones having to transition to a setting where they will depend on others. For those with severe ID/DD, size and location of the setting are red herrings. Those facets have far less impact on quality of life when set against the training, education, skill, dedication, and compassion of the caregivers who are employed to deliver what is necessary, what is appropriate, and what is regarded as essential to the health and well-being of those in their care.

        The dogmatic focus on size and location (variables easily expressed quantitatively) come at the expense of factors that bear a greater impact on quality of life. These factors possess an intangible quality not easily defined and measured. Evidence of this exists in settings that align closely with “community” criteria. We know that abuse and neglect occur in small community settings and it is difficult to ascertain the degree to which these offenses occur, in part, because the sites are scattered. Whether a home has 4 disabled individuals or 6 disabled individuals, the factors that remain consistent in the equation of maltreatment or neglect are those qualitative in nature. Even in a one-to-one situation in a typical apartment setting, quality caregiving is not guaranteed. Again, it depends on the caregiver’s skill, dedication, knowledge of the person, ongoing training, education, oversight, and accountability. In the face of widespread staffing shortages, accountability becomes a lower priority. Unless the offense is so egregious or criminal in nature, having support staff with only the slightest degree of skill becomes preferable to having no support staff at all. Will taking scarce resources and further scattering them improve this problem? This also neglects to consider the amount of manpower necessary at a regulatory level to provide oversight. Lastly, this situation applies only to the small percentage of people who have actually managed to find a residential placement. Wait lists are lengthy and there seems to be no resolution in sight.

        It is my hope that the ACLU takes these concerns into serious consideration. It would also serve our loved ones well to review the history of deinstitutionalization and unintended consequences and create safeguards to avoid a repeat situation of far greater suffering. Issues facing mentally ill patients such as homelessness, trans-institutionalization, and revolving short term hospital stays pose equally grave threats to the ID/DD population.

        In the meantime, let’s not place handcuffs on families striving to secure the best future possible for their loved ones by preventing the use of Medicaid funds for everything except this one-size-fits-all model. While some may focus on ideology rather than practical solutions for the current housing crisis, I would also suggest that the ACLU consider the civil rights of those multitudes of disabled adults left to languish on residential waiting lists for decades until their caregiver is dying or dead. Those adults can look forward to being dropped off wherever the next vacant bed is available, without regard to the appropriateness of the placement.

    • Statements like this make me sad, honestly. ASAN works very, very hard — and effectively — for the rights of autistic people of all abilities, as does Ne’eman himself. That includes people with high support needs like your daughter, and my own teen son. ASAN doesn’t want to eliminate residential settings, they want to insure that we aren’t inadvertently recreating past institutional horrors on group home scales. And that doesn’t mean eliminating group homes or residential homes, that means making such choices accountable to standards that have been developed by working with the disability community itself, by respecting human rights, and by analyzing decades of policy.

  • Jill Escher

    As a landlord who provides community-based housing to adults with developmental disabilities (primarily autism), I wish to add one more dimension to Amy Lutz’s brilliant discussion. That dimension is called reality. Every year it is becoming more and more difficult to create housing opportunities for adults with autism. The costs can be astronomical and the public funding streams are drying up. Adults with autism, including my tenants, tend to have very little income, usually just $900 a month via Social Security. and in our area average rent is about $2,400. Do the math. Almost no housing is currently available to them. Given the dramatic surge in adult autism and the aging of their parents, unless we intentionally create a flood of new options, including some congregate ones, our adults will live in jails, get locked in hospitals or end up dead on the streets.

  • Desiree’ Kameka

    ACLU clearly has no idea what is happening on the ground and is simply regurgitating what some paid advocate or lobbyist is telling them. I have visited intentional communities across the country and know that citizens with intellectual / developmental disabilities have the capacity to know their options and choose for themselves- they tell me their stories so I can share them on the Autism Housing Network… AND their quality of life is WAY BETTER than the calls I get of desperate families whose loved one is forced to live with them because their state says “there is no place for them” (which there really isn’t). ACLU- you are not helping by supporting restrictions on options, you are simply being used as a pawn to promote ableist ideology that saves the government money on the backs of caregiving families and citizens with I/DD!

  • 20autismmom10

    The problem with this article being called “Adults with disabilities deserve right to choose where to live” is that it’s written by a parent who is deciding where her son should live instead of embracing the ASAN belief that autistics should have the right to live fully included in their communities, with supports if needed, no matter the severity of the disorder. It sounds like he still would not have any decision as mom has chosen to make it for him.

    http://autisticadvocacy.org/policy/toolkits/hcbs/

    • Joan

      A significant percentage of people diagnosed with autism do not have the ability to make even the simplest decisions. They would not understand the complexity of housing options or how their choice would impact their lives. They would choose the last (or first) option, or the one with the blue kitchen because they like blue. ASAN supporters are blessed with the intellectual ability to process information and make informed choices. But they do not have the empathy or the understanding that other people have needs different from their own. For this reason, ASAN does not speak for all people with autism and should not be the final word on what people with autism want or need.

      • 20autismmom10

        Self-determination should be available for all. I’m not saying they need to make complex decisions, but they have the right to live in the community, be near friends, family and professional service providers who have been with them since first diagnosis if possible. And what if they would like a blue kitchen? Have a live-in caregiver paint it that way so the individual can be happy living in a place that is pleasing to her/him. How do you know they have no empathy? I’m not saying ASAN should be the final authority, I’m just saying that self-determination, properly facilitated with caring and concerned providers/family/supports does work. ngsd.org/sites/default/files/promoting_self-determination_a_practice_guide.pdf Behavior IS communication so until people learn how to communicate with nonverbal adults with developmental disabilities others will continue to assume they know what’s best without really knowing. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4770561/

      • ia

        If that’s your stance, then don’t get all self-righteous about choice

        • Amy Fisher Lutz

          Why not? If an individual lacks capacity to make an informed choice, then his or her family should be able to choose from a full range of options, to ensure that his or her needs and preferences are met. This piece addressed two populations: adults with I/DD who can make their own decisions, and those who can’t. Both these groups deserve the same range of residential options that the rest of us enjoy. Why can seniors to live with their peers in gated retirement communities but Jonah can’t? Are we really OK with protecting adults with I/DD by stripping them of their civil liberties?

          • IA

            “his piece addressed two populations: adults with I/DD who can make their own decisions, and those who can’t.”

            You used an individual liberty argument, and then made a bait and switch.

      • IA

        I don’t accept the premise that the color of the kitchen is an invalid reason for choosing a place to live.

    • Amy Fisher Lutz

      I have not “chosen” to make Jonah’s decisions for him. His severe autism and intellectual disability have left him without the abstract language and judgment necessary to make complex, long-term judgments. I wish every day he could make his own decisions, like his four siblings. Don’t all parents want that for their kids?
      I honestly don’t understand the pervasive denial of significant intellectual disability and the irrecoverable loss of functioning that results from it. It is simply a fact that intellectual disability runs the gamut from very mild, barely noticeable difficulties to catastrophic impairments that leave individuals forever at the cognitive level of infants. Would you argue that those so afflicted should have self-determination available to them?
      Jonah isn’t, thankfully, at that most profound level of ID. And he can make some choices, which we try to offer whenever possible: hamburgers or chicken for dinner? Water park or amusement park? Sesame Street or Barney? But because the availability of Sesame Street and hamburgers aren’t reasons to pick a long-term residence, and because Jonah isn’t even aware that issues like quality of staff and safety are even things in the world, we will always need to decide where he lives.

      • Emily Paige Ballou

        “I have not “chosen” to make Jonah’s decisions for him. His severe autism
        and intellectual disability have left him without the abstract language
        and judgment necessary to make complex, long-term judgments.”

        Okay, but then this IS about your right to make this choice for him and not about his right to make it for himself. You are writing not about his right to make certain choices, but your right to make them for him. So why frame the whole article around his right to make a certain choice, if you then say that he’s not actually capable of making such a choice at all?

        Group homes have not become illegal. Jonah COULD choose to live in one, or in another setup with other disabled people.

        What is increasingly the case is that funds designated to allow him to live in the broader community cannot be used to effectively keep him out of it.

        • MomtoTom

          What about intellectual disability are you NOT understanding??? You act as if people with ID are just faking it until someone who is not a family member asks them a question.

          What in the world is so great about the broader community???? I have neighbors who will not look my son or I in the eye because they want nothing to do with us. Please stop using my son as your blunt instrument to force the broader community into acceptance!!! He is not interested in your agenda. It is his life please let him live it!

          • Emily Paige Ballou

            “What about intellectual disability are you NOT understanding???”

            I could well ask you the same question. Intellectual disability means, well, that. It doesn’t mean that a person is completely and forever incapable of taking in information and making considered, informed decisions about what they want for their own life.

            It DOES mean that they might need that information presented differently, in simplified language or format, need more time to process it, and need help with various facets of decision-making. It DOESN’T mean someone is incapable of genuinely knowing what they want or having good reasons.

            And of course it would probably be exceedingly difficult for someone with an intellectual disability on top of complicated communication challenges to process the information necessary to make a complex decision if that information is dumped on them all at once when they reach 18 or 21 years of age, with no preparation or context or experience being taken seriously as a person who should be allowed to make decisions. But there’s just no reason to create an information cliff like that, instead of intrinsically involving people with I/DD in the decisions made about themselves from early childhood onward.

            That’s what I think parents and family members SHOULD be doing.

            “You act
            as if people with ID are just faking it until someone who is not a
            family member asks them a question.”

            I don’t even know where you get this from.

    • Zwerger

      So, when an autistic adult cannot clearly articulate a complex choice (I want to live in a large community setting with a depth of support options or in a house in a neighborhood where I might not have as many supports) – ASAN believes that the only option should be a neighborhood house? ASAN believes that they speak for all autistics who cannot fully speak for themselves? ASAN disregards a parent’s assessment of whether or not their autistic family member is more happy in one setting than another based upon years of knowing and loving their family member?

  • Aaron Vorell

    Great article Amy! None of us want people with disabilities to be shut away and left with no meaningful connection to the community at large, but the nearsighted and myopic view the ACLU is now supporting is not founded in reality. In my 13 years of working with adults with disabilities and their families I have found time and time again that loneliness, isolation and vulnerability are common issues that lead to a poor quality of life. Most of the planned communities or settings that so called advocates, and now the ACLU, are labeling as segregated were created to address the pervasive loneliness and vulnerability so many face. We are not saying people should live in planned communities, we just believe people should have the choice! Why this is even a debate baffles me. I hope common sense and logic, along with respect for the individual, will prevail soon so we can move beyond arguing and fighting about people trying to take choices away- then we can all be busy with creating more housing and support options for those with intellectual and developmental disabilities. I think we ALL owe that to those we are serving and supporting!

  • Gene Bensinger

    Thank you Amy Lutz for bringing attention to this troubling inconsistency at the ACLU. Unfortunately, their position is pervasive in today’s far too ideologically driven disability community. Over the many decades since the important enactments of the landmark ADA and DD Act, disability advocates, many publicly funded, along with leading regulators have lost their way. In their effort to defund and eliminate all care and support models except independent living, under the guise of “de-institutionalization” and “system rebalancing”, they have apparently accepted the notion that collateral damage in the form of abuse, injury, or death for some, especially those with severe impacts, is a price worth paying. I vehemently reject that approach and I think the broad public would, too (if they knew).

    The term “institution” has been absurdly broadened and corrupted by government advocates and regulators to define ANY model that’s not independent living. The phrase “community based” has been narrowed beyond plain understanding to define as acceptable only settings where persons with disabilities are dispersed to the maximum degree possible. I think most of us know a “Dickensian”, involuntary, segregated institution when we see one, and most of us know and experience many “communities” in our daily lives, some specialized and narrow, some very broad. Let’s bring some common sense definitions and approaches back to regulation.

    Disability “rights” should be cherished and vigorously defended but they shouldn’t be turned into disability “requirements”. As long as housing, work, or day service models are voluntary and free of coercion, safe for all, and connected to their broader communities, individuals should have the ability to choose the ones that best fit their needs and wants.

  • IA

    Amy SF Lutz: PWD should be able to choose where they live.
    Also Amy SF Lutz: I get to choose where my kid lives, not him.

    If you want to argue he’s incapable of making that decision for himself, fine, but then you need to stop being so self-righteous about “choice”.

    • Alison Singer

      What form of expression would be acceptable from a nonverbal individual with severe ID? My daughter is in a residential setting and is happier there than she has been in any other setting. She can’t communicate this directly, because she doesn’t have the language, and so she can’t talk to a reporter writing a story about this topic, but I can see it in how happy she looks, the fact that she is always eager to get back to her job and house there, the fact that she has made friends with the others girls with autism in her house (first friends ever!), the fact that everyone who visits her remarks on how great she looks and how happy she seems, and the fact that because of all this, she is able to take less anxiety medication. We need to accept all forms of communication when considering what a person wants.

      • Suzette Grosz

        I truly believe my son would also be happiest in a residential setting with his peers. He would be miserable in a small group home. 😏

  • Zwerger

    Amy – thanks for fighting the good fight to advocate for true choice for all. Here’s what I just sent to the ACLU:

    SUBJECT: ACLU fails to support choice of options?
    As I supporter of ACLU and all of the work you do to support choice in our society I’m almost wondering if the above article which says that the ACLU has taken a stand AGAINST choice could possibly be “fake news.”
    As an Independent Living Specialist for one of the many federally mandated Centers for Independent Living I applauded your controversial position on proposed legislation to ban individuals who receive disability benefits based upon mental illness from buying guns. Society should not be allowed to label a whole group of people as unable to make their own individual decisions.
    As the mother of a 19 year-old autistic daughter I’m saddened and appalled that you seem to believe that she is unable to make her own independent decision regarding her choice of where she wants to live.
    Your stand against large residential communities for adults with disabilities is a slap in the face for my daughter. She has lived in our family home and in small and “large” settings. Her neighbors wanted nothing to do with her or her housemates when she lived in a small setting. In a larger setting she has access to many more activities and peers with whom she can have an understanding and mutual relationship. It is similar to the on-campus college setting that my husband and I are thankful we had in our early adult years.
    She loves being with lots of people who understand her; are not put-off by her self-injurious behaviors or her loud, happy vocalizations. Also, she loves being able to go to Target, hockey games, parks and the theatre with her staff and peers. She has access to the necessary supports for her daily care needs and communication in this setting.These settings allow continued high-level oversight and a depth of expertise to make sure she can fully communicate her wants and needs with assistive technology.
    And yes, she insists and we insist that she continues to be at Target, restaurants and other “public” venues. She loves it and it is also important that people in the general population develop understanding of her differences and to embrace and value her.
    My grandmother chose to live in a retirement community in a single building with 75 residents when she was 70 years old and perfectly able to live independently. Would you tell her that she is unable to make that choice because you have deemed such settings are by nature institutional and therefore morally wrong?
    I understand that the ACLU would again be put in a highly controversial and politically problematic position if you supported fully independent choice of living options for adults with disabilities. ASAN has taken an immovable stance on this issue and no one appears to be willing to acknowledge that ASAN’s stance disregards individual choice.
    The ACLU has stood on the principle of promoting individual choice in the face of what often feels like a reprehensibly immoral choice. Yet when it comes to adults with disabilities the ACLU is not willing to take a stand that they should also be allowed to make any choice they want – that somehow, they are not able to make a choice that is in their best interest, apparently because of their disabilities.
    My daughter needs YOUR support regarding her choice to live where she wants to live.
    Will you be her voice or will you continue to capitulate to the political pressure to invalidate her choice?
    With respect and hope –

    :

  • Susan Houghton

    Kudos Amy! Thank you for advocating that all voices and all individual choices need to be heard and honored – regardless of the type of residential unit and location. I understand the desire of ASAN and others to ensure inclusion — but I also see a tendency to focus on the physical/mild aspects of having a disability vs. the developmental realities. Of course we want those with physical disabilities and/or mild autism to live their lives to the fullest with as much inclusion as possible. But conversely, inclusion should not be forced on those who desire routine and their friends, yet need safe settings and more supervision. As President of a California-based organization now developing housing for more than 74 individuals with special needs, I can assure you what we’re building is a drop in the bucket compared to what’s needed. Jill Escher is right — where will the influx of individuals with autism and special needs live? And if we don’t create it, who will? It starts now – with us and for our kids. Let’s embrace all opportunities! Susan Houghton, President, Sunflower Hill

  • deadslug

    Bah. This article is clickbaity. Here’s why: There’s nothing here that says that autistic adults can’t live wherever they want. The only issue here is what sort of services and what not will be paid for with public funding. That’s it. It is true that the high cost may prevent some from privately paying for the setting they may want, but that’s beyond the scope of public financing. And that’s not even getting into the ableism you find when family members think they know what’s best, or think they are the best adjudicators of whether or not their disabled relatives are “happy” or not.

    The CMS rulemaking is right. Programs can and will adjust. Parents will have to learn to try to communicate with their disabled children better. More vocal autism self-advocates can have invaluable insights into how to do this.

  • Phyllis Cassidy Simpson

    Thank you so much for this. In New Jersey they have closed the majority of in-resident facilities in favor the small group home option. My autistic 55 year old sister has lived in one of these facilities for 47 years. Back in the early 60’s when she was a child, no one new the term “autism” and the best and brightest specialists in the NYC metropolitan area at the time labeled her “mentally retarded”. When she started to become a danger to herself and others, with no other help available, she was placed in a residential community. The term “mentally retarded’ was obviously a misnomer and she was finally diagnosed as autistic at the age of 37. My sister can be calm and well behaved, but as she has no impulse control, she can lash out violently. Most of the time she’s calm and quiet, so she can be deceptive. She can speak, but she usually only speaks to herself, unless she’s asking for something like food or to do an activity. She does that in the third person. “Leslie wants a drink”, etc. She does not converse. She can write her name and read a few words, but at best she reads at a first grade level. It’s impossible to measure her reading comprehension. She can’t use a phone, doesn’t understand the concept of money, has never used a stove or a microwave and has to be instructed to wash and dress (she can do those things by herself but only if instructed to do so). In all of the 47 years she has lived in residence, the consensus was that she was where she needed to be, to keep her safe. She seems happy and well cared for, and over the years, she enjoyed weekend or day visits with us, but she always got tired of us and asked to go “school”. When the facility that she had lived in for 45 years was shut down by the state, we were fortunate enough to get her into one of the limited beds at another facility. All of her case workers, therapists, physicians and other staff members supported the decision not to put her in a community based home. In 2015 when we had her annual review, the staff, my 80 year old father and I (my mom is dead and my father and I share guardianship) agreed, that she was not able to live in a community based setting as there was not enough supervision to care for her needs. In 2016 at her review, only my father and I agreed with that decision. When we asked the staff (almost all of them the same people as the year before) what about her behavior and ability had changed to reverse their opinion, they said nothing about my sister had changed, but that their standards to recommend facility based placement had changed. Fortunately, for now, the family’s wishes still take priority. They do ask my sister what her opinion is, but she is always unable to answer. She doesn’t comprehend the question. I asked them that in all of the 47 years she’s been institutionalized, what training has she ever received to prepare her for a small group home setting. The only thing they could point to is a 1 hour a week program that she had been going to for the prior 6 months. when asked what that entailed, they told me they were teaching her to identify coins, distinguish between a nickel, dime and quarter. They had so far been unsuccessful as she showed no interest in any of the activities they tried to get her to do. This terrifies me. I live in fear that my sister will be pushed into an understaffed, under-regulated group home setting. What happens if she lashes out and hurts someone in that environment. I’m assuming the police would have to respond, and they are not trained to handle someone like my sister. For her whole life, my family hoped that she would one day live in community environment, but it’s not possible. I know the people that advocate these things have good intentions, but the one size fits all approach doesn’t work to meet individual needs. A variety of care and settings are necessary to ensure no one falls through the cracks.

  • Zwerger

    Amy – thanks again for fighting the good fight for full choice of living options. This is part of an email sent to the ACLU after reading your article –

    SUBJECT: ACLU fails to support choice of options?
    As I supporter of ACLU and all of the work you do to support choice in our society I’m almost wondering if the above article which says that the ACLU has taken a stand AGAINST choice could possibly be “fake news.”
    I applauded your controversial position on proposed legislation to ban individuals who receive disability benefits based upon mental illness from buying guns. Society should not be allowed to label a whole group of people as unable to make their own individual decisions. I’m a fierce gun control advocate but recognize that we cannot allow legislation which negatively targets a specific group based upon a disability.
    As the mother of a 19 year-old autistic daughter I’m saddened and appalled that you seem to believe that she is unable to make her own independent decision regarding her choice of where she wants to live.
    Your stand against large residential communities for adults with disabilities is a stand against freedom of choice. She has lived in our family home and in small and “large” settings. Her neighbors wanted nothing to do with her or her housemates when she lived in a small setting. In a larger setting she has access to many more activities and peers with whom she can have an understanding and mutual relationship. It is similar to the on-campus college setting that my husband and I are thankful we had in our early adult years.
    She loves being with lots of people who understand her; are not put-off by her self-injurious behaviors or her loud, happy vocalizations. Also, she loves being able to go to Target, hockey games, parks and the theatre with her staff and peers. She has access to the necessary supports for her daily care needs and communication in this setting.
    These settings allow continued high-level oversight and a depth of expertise to make sure she can fully communicate her wants and needs with assistive technology.
    And yes, she insists and we insist that she continues to be at Target, restaurants and other “public” venues. She loves it and it is also important that people in the general population develop understanding of her differences and to embrace and value her.
    My grandmother chose to live in a retirement community in a single building with 75 residents when she was 70 years old and perfectly able to live independently. Would you tell her that she is unable to make that choice because you have deemed such settings are by nature institutional and therefore morally wrong?
    I understand that the ACLU would again be put in a highly controversial and politically problematic position if you supported fully independent choice of living options for adults with disabilities. ASAN has taken an immovable stance on this issue and no one appears to be willing to acknowledge that ASAN’s stance disregards individual choice.
    The ACLU has stood on the principle of promoting individual choice in the face of what often feels like a reprehensibly immoral choice. Yet when it comes to adults with disabilities the ACLU is not willing to take a stand that they should also be allowed to make any choice they want – that somehow, they are not able to make a choice that is in their best interest, apparently because of their disabilities.
    My daughter needs YOUR support regarding her choice to live where she wants to live.
    Will you be her voice or will you continue to capitulate to the political pressure to invalidate her choice?
    With respect and hope –

  • Unfortunately, this article is misleading — starting with the headline. This is not an argument about adults having choices, it’s about parents wanting to make choices *for* their adult children, without interference from regulatory agencies and policy.

    I want the best for my high-support autistic teenage son with intellectual disability, so I look to the people in his autistic and disability communities for direction as to what works best for housing options. This includes orgs like The Autistic Self Advocacy Network (ASAN), because they work with other disability orgs representing people of all abilities (including intellectual disability), and for people of all income levels — because these policies are NOT just about what works best for my own family. So it is a good thing that the ACLU is also prioritizing the preferences of disabled people themselves.

    States’ refusals to fund specific types of congregate care (which, btw, is not a ban on all group homes) are meant to improve the quality of life for people like my son Leo and the author’s son Jonah, and prevent those we love from being warehoused or abused. Not to take away parent choice.

    That there isn’t always enough funding to support people with significant support needs in the ways they deserve — that is indeed infuriating, and wrong. Leo, Jonah, and every disabled person who will need life-long living supports deserve better. I just don’t think Ms. Lutz’s argument is actually going to further that cause.

  • For another perspective, I encourage readers to consider what a policy expert who works with the wider disability community has to say about housing choices for autistic adults:

    http://www.thinkingautismguide.com/2016/08/autism-and-adult-housing-choices.html

  • Emily Paige Ballou

    I find it interesting that not once in this article do we read any documentation of what Jonah actually does want.

    • MomtoTom

      And why do you really think it is any of your business? That’s the problem. It is his and his family’s business, but somewhere along the way people like ASAN and you think it is your business.

      • I’m guessing it’s because she’s part of the disability community and is aware of history and community members’ residential experiences that parents frequently are not. So she’s concerned for Jonah in a way parents aren’t always able or willing to be.

        • Denise_M_Lombardi

          “she’s concerned for Jonah in a way parents aren’t always able or willing to be”

          This is an absurdly contemptuous judgment of Amy and all parents, including myself, who disagree with the notion that by sharing a diagnosis, a complete stranger would be better suited to address the well-being of the disabled person.

          • It’s not contemptuous, it’s reality. My husband and I know my son as a person better than other people do, and I’m sure the same is true of Lutz’s family. But when it comes to knowing — really knowing — about the bad things that can happen to people with disabilities when their choices are limited and their living arrangements aren’t ideal, a person steeped in disability community history and experiences is going to be plugged in to better insights. The kinds of factors that make supported living intolerable or dehumanizing are not always the sorts of things parents know to look out for. Here’s an example of a first-person account, though: https://ballastexistenz.wordpress.com/2012/01/23/what-makes-institutions-bad/

          • Denise_M_Lombardi

            There are too many assumptions in this comment.

            Policies, procedures, protocols, safeguards etc are critical to avoid “bad things”. Reviewing historical events and identifying what mistakes were made is critical. A person with a disability has insights to their own experiences and those are valuable and can be taken into consideration but it should not be assigned a higher value in research “just because I’m disabled”. Policy should always be driven by evidenced based decision making, not merely anecdotal testimony. Care should be taken to avoid unintended consequences like those suffered by mentally ill patients during the years of deinstitutionalization. Many of those discharged into a community setting “because it’s better” wound up in even worse situations. We’re not going to hear all of their relevant testimony because some ended up homeless, some ended up in jail, and many of them did not survive.

      • Emily Paige Ballou

        I mean strictly speaking, it isn’t. But this author has virtually never evinced any understanding of the difference between her opinion and her child’s opinion. It’s an important distinction.

        The choices he might make about where to live also aren’t really any of my business. But the fact of whether or not he has the right to make them, well, yeah, I think that’s everybody’s business because that’s a matter of the human and civil rights of all people with developmental and intellectual disabilities. Whether we are presumed to have the right to make choices about our own lives…that affects me personally.

        I think it would be worse if I were to say “Oh yeah, you’re right, because this person has an intellectual disability, his civil rights have nothing whatsoever to do with me,” and I think a lot of parents would have an absolute fit if the autistic self-advocacy movement were actually saying that, but that seems to be what you want…

  • NOS Magazine editor Sara Luterman has specific concerns about Lutz’s position, as well:

    “Amy Lutz and others who mask new institutions as a “choice” do not draw a healthy or appropriate distinction between themselves and their own children. When they say, “adults with disabilities deserve the right to choose,” they mean is that their opinions are their children’s opinions. They do not believe that their children are capable of having opinions about any serious or real issues. They see their children as extensions of themselves, rather than distinct human beings.”

    Full piece: http://www.thinkingautismguide.com/2017/05/you-are-not-your-child.html

    • Zwerger

      I didn’t read anything in the article saying that the author didn’t believe her son was incapable of having an opinion. I think she is saying that her son isn’t capable, as far as anyone knows, of grasping all of the implications and complexity of choosing his own living environment in addition to the fact that he can’t express an opinion about a future theoritical circumstance. I can absolutely guarantee you that she desperately wishes that he could make that choice for himself.

      It sounds like you believe that her son could both form and express his own opinions if she just allowed him to do so?

      Are you inferring that all autistic individuals who also have a cognitive disability would be able to communicate their wants if their parents would just stop treating them as “extensions”?

      This sounds like a variation of the “cold mother” caused autism in her child theory from years ago – we “cold” parents who can’t separate from our children are preventing them from expressing their opinions. No, we are scared to death that our adult children will not get what they need and deserve- a life where they can get their daily needs met and in a setting where they are respected and valued for who they are as individuals. I have to believe that ASAN and other groups want the same thing – they just can’t agree, based upon anectodal experiences, that a large and densely populated community of adult autistics living together with appropriate supports should be an option supported with Medicaid dollars.

      • The article I’m quoting is asking parents like Lutz to consider that loving their kids and being scared about their future is not sufficient justification for making decisions that may be against those kids’ best interests. Instead of getting angry with self-advocates and railing against restrictions, parents should be listening to the greater disability community that shares much of their kids’ support needs, and which, based on data (not only anecdotes), history, and policy, has a better understanding of what kinds of long-term housing options actually work best for high-support adults.

        • Zwerger

          Shannon, I would greatly appreciate seeing the data you referenced.

          • Plenty here, and available from various state agencies: http://www.squidalicious.com/2016/09/you-can-choose-where-you-want-to-live.html

            But that’s not really the point. The point is that parents generally don’t have the experience or draw on the history or broader knowledge that policy experts and disability advocates do.

          • Zwerger

            Shannon, thank you for providing this article. I didn’t see any studies cited in it to show that rates of abuse are lower in one setting or another. I’m looking for that information as well as information that measures level of consumer satisfaction and quality of life in a variety of settings.

            You can’t have it both ways – you can’t be claim that better informed decision making is necessary without having data (again not anecdotal stories as heartbreaking as they are) to back up your claims that parents are inept at making well-informed decisions.

            Your statement: “…parents don’t have the experience or draw on the history or broader knowledge that policy experts and disability advocates do.” is merely an opinion if it is not backed up by data.

            I know many parents who have spent a great deal of time learning the history, understanding policy and advocating for change to allow their children to be as independent as possible.

            Are all parents able to spend their time and resources to do that – of course not, they’re spending their time providing the intensive supports their children need, and yes, just like in the general population there are parents who abuse and neglect their children and adult children who have guardians appointed by the state.

            To take a policy stance that certain settings have less risk for abuse without data to support that stance is dangerous – it is a form of science denial and it provides a false sense of security. Abuse happens all too often in small group homes – I work in an agency that monitors these abuses. I’ve seen no evidence that the rates of abuse are smaller in these small settings than in larger ones.

            We parents of adult children who are required to have legal guardians need policy makers to make decisions on real data. If ASAN wants to have THE voice for all autistic individuals then they need to honor a person-centered process and take the time to get to know each of our children – assign someone to walk alongside them for two weeks from dawn to dusk as the ACLU attorney recommended. If ASAN determines that this is not feasible then they need to step back and let the person-centered process work as it is mandated to do so – with the person having people at the table that know him or her well and always have the legal guardian on the team.

      • Emily Paige Ballou

        This is from her comment above:

        “I have not “chosen” to make Jonah’s decisions for him. His severe autism
        and intellectual disability have left him without the abstract language
        and judgment necessary to make complex, long-term judgments.”

        This whole article is framed around Jonah’s supposed right to make a particular choice. But the author is actually talking about her right to make that choice for him.

        There is a difference.

        She’s also just wrong. If she has an arrangement that legally recognizes her right to make decisions for her son because he can’t, then she still gets to decide where he lives.

        But Medicaid is increasingly not allowing money intended to to allow people like Jonah to live in the broader community, to be used to keep them in institutions instead. For a whole variety of reasons which you could take up with them.

        But if the author is making the claim that her son is not capable of making complex, long-term choices, then, inevitably, we are talking about her right to make certain choices for him, not his right to make them. And yes, it is increasingly true that Medicaid will not pay for her to choose to put him in a large institution.

        • Zwerger

          Shannon, as you probably know, when a legal guardian is appointed for an individual the guardian is responsible to be that individual’s voice. That is the legal mechanism by which necessary support services are put in place.

          By law a guardian is held accountable for making appropriate decisions for the “protected person.” A guardian can be found liable for any abuse that may happen if the court finds that the guardian should have been monitoring the protected person more closely (therefore the requirement for regular contact.)

          Deferring to an organization’s stance on what is appropriate would be a violation of the rules (and yes, we’ve had instructions from a judge on this issue.) We are required to make decisions based upon personal knowledge and our best determination based both upon the protected person’s wishes
          as well as what is in their best interest.

          So, in the specific case Amy articulates here​ taking away an option from a legal guardian equals taking away an option of the protected person.

          I can guarantee you that we parents who must make these decisions for their children lose sleep over the rates of abuse that happen across all settings. I’ve never seen data to support the claim that abuse is higher in one setting versus another anytime a person needs a great deal of personal care.

          • Re: Abuse: What we know from human behavior is that when people think they aren’t accountable, they do things they do not do in accountable situations. That is part of why HBCS accountability for residential settings is so important.

            Your other argument assumes all high-support adults will automatically be conserved/placed in guardianship. That is neither true nor necessary, and distracts from the wider discussion of choice.

          • Zwerger

            No Shannon, we’re talking about this article and the high support needs children described here – a group that continues to be overlooked by ASAN, by CMS and now the ACLU.

          • Claire Cameron

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          • Denise_M_Lombardi

            This is sadly true. As is the case in other advocacy movements, those with the most privilege tend to disenfranchise those who have less. Guardianship of a person considered not legally competent confers legal authority to the extent that is necessary. What is blatantly obvious to parents whose loved ones are not legally competent, is the usurping of our guardianship authority. How anyone would let that right be dismantled based on this notion that complete strangers care more, know more, and are better suited to guide policies about our children strictly because they have the same diagnosis is beyond my comprehension. Apparently, the heterogeneity of the spectrum does not apply in this scenario.

  • CPSH

    North Texas Charity Files Complaint With HUD – One Click to Unite4Housing

    COMMUNITY FOR PERMANENT SUPPORTED HOUSING (CPSH) has filed a housing discrimination complaint with the United States Department of Housing and Urban Development (HUD) for Dallas Housing Authority’s (DHA) cancelation of a project based voucher program. As a result people with intellectual/developmental disabilities in Collin, Dallas, Denton, Ellis, Kaufman, Rockwall, and Tarrant Counties CAN NOT access community-based, service-enriched, affordable housing options. This d

    Housing discrimination toward people with IDD is illegal as stated in the Fair Housing Act and the American Disabilities Act. By requiring reasonable accommodations, the Fair Housing laws ensure that tenants with disabilities have the same access to housing as everyone else.

    In addition to DHA’s interpretation of the HUD statement in the Federal Register, other Housing Authorities may also be limiting access to housing for poople with IDD because of similar interpretations of the HUD statement in the Federal Register.

    About 100,000 adults in North Texas, 525,000 adults in Texas and 7 million in the U.S. are living with Intellectual and/or developmental disabilities and have at least one challenge to living independently. Most of them will outlive their parents. Where will they live? We all must work together to identify affordable housing for them before we are no longer able to care for them. Their futures and our peace of minds are at risk.

    For more information about the complaint and sending an email to housing leaders go to txcpsh.org/unite4housing

  • RLTO

    The problem here is with the disability rights Taliban, like the ACLU, who think they know better than any disabled person, or the parents of those who are profoundly disabled, what’s best for them The last time they weighed in on a similar issue, they forced millions of mentally ill people out into the “community,” where they wandered the streets and became crime victims. You can’t help but notice that they always point to examples of the disabled who want to live in small group setting who just coincidentally happen to be ambulatory and high functioning disabled people. They never seem to highlight those who need g-tubes, can’t speak, and need intensive care that can’t be provided in group homes. They also don’t mention the growing evidence of abuse and neglect in group homes, where many fewer eyes are on the residents.

    • Your accusations are inaccurate, and your language is inflammatory.

      • RLTO

        Your ignorance and determination to adamantly ignore my point is quite apparent. The ACLU speaker to whom you later refer addressed in her talk only the needs of, guess what? Disabled people operating at a level of functioning who need no more than a minimum level of assistance and who can make many of their own decisions. Just like said. Since I was discussing the failure of the ACLU position to address the needs of severely disabled people, and the needs of those with severe physical needs group homes are mostly unable to serve, most of whom are also cognitively unable to make independent decisions, you thoroughly failed to get even close to my point, preferring instead to insult me. Your insults prove my case quite nicely. Say hello to your fellow Taliban members.

  • With regards to the ACLU, here is a rep’s related talk on helping high support individuals with this kind of decision making: Susan Mizner, at UCSF, on Supported Decision Making, Civil Liberties & Alternatives to Guardianship:

    http://www.uctv.tv/shows/Supported-Decision-Making-Civil-Liberties-Alternatives-to-Guardianship-32192

    • Zwerger

      Shannon, thanks for sharing this. I’m a firm believer in person-centered planning and shared decision making as is “feasible” – to use a concept discussed in this presentation. The problem – one described in many of these comments – is that this presentation is not talking about individuals like Amy’s son. The presenter assumes that the individuals she is talking about are able to be independent in ADLs and essentially have outgrown their need for a conservatorship over time as they are encouraged to learn from mistakes and therefore learn how to make their own decisions.

      As we’ve asked for repeatedly in our pleadings with CMS and ASAN – please recognize that the support needs of some of our children are outside the bounds of their overreaching policy positions and subsequent funding.

      • Funding issues are messed up. I don’t think anyone here would argue that point. There isn’t enough choice to begin with, and I understand that parents get frustrated when those choices appear to be even further limited, and want someone to blame. But ASAN is working for the best interests of our community’s adults and adults-to-be, based on policy history — and also through being part of the disability community and therefore understanding the implications of these policies in bone-deep ways that non-disabled parents frankly can’t.

        But Mizner isn’t assuming the kind of independence you mention, nor that increased skill acquisition happens with all high-support disabled adults; she is asking parents to consider that such things may happen, and that in those specific cases the restrictions of conservatorship would make a person’s life difficult.

  • MomtoTom

    We have a non-verbal son with a thick layer of autism and pretty significant intellectual deficits. Fortunately for us, our son has been very clear as to how he would like to live, whom he wants to be around and where he feels most comfortable. We discovered his desires after a few rounds of special needs summer camp. Even without words he communicated that he was most comfortable being around people like him and around those people who are comfortable being around him. We thought that this newfound comfort that he exhibited at camp would be translatable to the rest of his world. It did not. So, we thought perhaps what would be ideal for his forever home (rather than living in his sister’s basement after we are gone) was for him to live in one of the intentional communities that we have visited and he enjoys. But there just is not any room for him in these communities.

    As a mother, I am wondering why there are people who feel that my son should not live in the way he has so strongly expressed interest. Lots of groups live the way they want… young people head off to college and live in a fraternity or sorority, they choose where live during their working years, they retire and head off to Leisure World and no one bats an eye. But if a group of ID adults want to do something similar, all hell breaks loose! What is this about???? We appreciate that some have found that their ideal life experience is to be around and involved in the so called *neuro-typical* world as much as possible, but to insist that my son who is incredibly uncomfortable around people who don’t understand him, don’t really care to understand him and make him feel odd is not his ideal life experience. We need more communities that would make individuals like my son happy, not less!

  • Sharon Finnegan Weyandt

    Are you kidding me?? Leave my 24 year old son with the intellect of an 18 month old baby make his own decisions?? Seriously?? What planet did you come from?? Did you let your 18 month old pick out their own potty chair or day care or clothes or meals?? Of course not you did that for them!! So do not tell me that my son should be making his own decisions when he doesn’t even feed himself without direction….bunch of neurotupical assanine idiots

  • Suzette Grosz

    My son is 16 years old now. He is in a self contained classroom in an alternative school where he is happier than he has ever been in a school setting. There are 8 kids in his room, most of them have their own para and there is also a Teacher in this room. This is the type of setting where he is the most successful. They go out into the community often, sometimes daily. There are many other adults who are in and out of the classroom daily such as SLT, OT, PT, Art teacher, Coach, Nurse, behavior therapist, volunteers, etc… He functions best with this high adult ratio, highly structured environment, where he can be around a small group of peers (8-12) being very active physically on a daily, full-time basis but he also requires a locked facility to keep him safe as he will sometimes bolt with no regard for safety. I pray when he is out of High School (in 2 years) that we can locate a facility similar to this. He cannot tell you what he would want but you can definitely tell what he needs by observing his behaviors. When people who have disabilities are not able to voice their choices, their guardian should be able to choose for them.

  • Micki Edelsohn

    Does the word capacity have no meaning at all? My 45 year old son functions at a 6 maybe seven year old level. He has lived in a group home for over 20 years but does not have the capacity to drive to his job, shave himself, cut his nails, write a check, or cook a meal. However, he has a full and productive life, chooses to participate in a chorus that has performed not just locally, but at Harvard and Yale. He is a member of Totally Awesome Players – actors with and without disabilities, and participates in many Special Olympics sports. However, if you ask him if he wants $5,000 or an iPhone, he’ll pick the phone every time! And after 20 years of living in a home on a lovely tree lined street, have any of the neighbors ever asked my son and his three housemates over for a barbecue, or go to a movie, or even go to the grocery store when they go? My son needs and will always needs assistance every day to get through his day. My dream has been for him to live in an intentional community where he would have more freedom to interact with others with and without disabilities. He would not be isolated, he would still go to his full time job at Bank of America, he would still go out to his activities. Capacity, capacity, capacity! Why have laws that protect children until the age of 18, if I am now told that my 45 year old son who is functioning at a 6 year old level should not have a guardian? Where is the common sense? Today we took our son to the new Museum of the American Revolution in Philadelphia where you are reminded of the words of our Declaration of Independence- that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. Why does the ACLU ignore these basic rights that should apply to all including those with Autism and IDD? Why ignore choice when it is made by capable self advocates or parents or guardians of those with the capacity of a child?

  • Ethyl

    According to the link Shannon Rosa provided to the ACLU video on supported decision making, clients can be provided “supporters” who help to interpret difficult legal documents in a manner that they can understand. http://www.uctv.tv/shows/Supported-Decision-Making-Civil-Liberties-Alternatives-to-Guardianship-32192
    If your children can understand these “plain language documents”, they are competent with support, which seems to be relatively new terminology. (ASAN has examples on their website. This one is for medicaid. https://autisticadvocacy.org/wp-content/uploads/2017/05/1.-Medicaid-Introduction-and-Background.pdf)

    In the same video, the competency evaluations are covered. The tools used are neurological and medical history, IQ exams, ability to communicate (to understand and be understood in any manner), short term memory tests, problems solving skills, functional assessments. Sadly, many children may not be found competent to make their own decisions, and a responsible party, usually the parent, will have to make those decisions for them.

    I was a special ed teacher. I can see where some of my students would have been competent, while others would not have been capable of understanding power of attorney, healthcare decisions, post high school educational decisions, finances, HIPPA releases, etc. I doubt that many of the parents of severely intellectually disabled children would have to worry about their child being found competent, legally.

    I don’t know what the fight is about.

  • Claire Cameron

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    Thanks for your consideration in keeping this forum a safe and inclusive discussion space for all.

  • Tammy Bost

    Amy, I want to congratulate you on a very informative and heartfelt article. I know it’s from your heart because you have a son with severe autism just as I do. Your son and mine have so much in common from their intellectual disabilities to their intense behaviors to their long stays in a hospital as a result of these behaviors. But there is one difference. Whereas your son is approaching adilthood, mine is already there. From the time my son was diagnosed at age 3, we have fought for as much integration into regular school curriculum as possible. He attended regular public schools with one-on-one aides. By the time he graduated and aged out of school, we had already obtained conservatirship over him and applied to an inpatient admission for severe self injury. This notion that all individuals with disabilities should live independently or in homes with one or two others sprinkled throughout the community sounds great. It was what I spent the past twenty years preparing my son to achieve. But after all that time, he’s still monverbal, aggressive, and self injurious. He still needs 24 hour a day assistance. He still needs total help with bathing, dressing, eating, and making choices. To say that he is able to determine independently that he wants to live in one environment or another is to completely misunderstand him. The autism spectrum is huge. It includes people with PhDs and people like my son who bang their head until it’s bloody because I didn’t understand that he had a stomach ache. I can speak with years of experience about underpaid staff who have no training in ABA, his seizures, and how to deal with self injury and aggression. They receive no training in how he communicates or how a sensory diet works. It’s no wonder that staff refuse to take him into the community or leave after a few weeks or months if we’re lucky. Often I’m happy to see them go. As tired as I am, it’s easier to do it myself than to deal with making sure staff is following protocols and keeping him safe.

    So it upsets me when people say that we would be segregating our children in planned communities. I believe people have the best of intentions. But they need to know that what we want is for everyone to have choices. Many on the autism spectrum can choose where to go to college, what to study, and where to work. They can choose whether to live in an apartment or buy or rent a home and in what city. We want the Same choice for our children who cannot choose for themselves. Why can’t we parents who have been making choices for our children for many years be trusted to know what they need in their living arrangements? Why can’t we be able to grow old with the peace of mind that our adult children are living with well trained professional staff who are equipped to keep them safe,provide attention, and take them on outings and actually INCREASE their freedom, not restrict it.

  • Tammy Bost

    Ehttps://disqus.com/by/Tammy bost

  • mws13

    1) Speaking about my specific son, I would love for him to make decisions for his own life. He is 19 years old, and it was a simple process with a NY State judge to acquire our Guardianship for Dustin as it was very obvious that he cannot make life decisions. I am more than happy to be proven wrong on this, but I just don’t see that happening. 2) I think there are a number of very interesting housing/community models that our advancing for the Autism/Developmentally Delayed population, but funding is a problem. Denise Resnik has created an interesting model at First Place in Phoenix https://www.facebook.com/FirstPlaceAZ/ and I need to learn how they did it. If our population/market in NY State had real access to “Tax Credits”, and re-development funds similar to the NY State Office of Mental Health (mainly homeless housing), I think our DD population could be a REAL catalyst for many Upstate Towns and Cities. 3) Farms – The conversation of farms being viewed as closed off (see institutional) needs to be updated. I agree that our populations needs to integrate with mainstream populations, but we need to evolve these views on farms and agricultural settings. 4) Finally, I would like to see our Developmentally Delayed population integrate with other populations such as senior citizens, Veterans, college students studying education…. Our DD populations can and will bring “purpose” to other populations but we have to be realistic. We have to find populations and people who want this “purpose” rather than force it on them. Hope this helps.

  • Gene Bensinger

    Some of the comments above have touched on issue of outcomes based on various settings. I think it’s really important for folks to understand that little to no useful research (or even data) exists that addresses: outcomes for PWD or ASD by type or density of service model or setting; the severity or type of the person’s intellectual or developmental disability; or other relevant factors like co-morbid medical conditions, self injurious or aggressive behaviors, risk of elopement, communication impairment, etc.

    The mountain of oft invoked research that has been published over the last few decades largely consists of post de-institutionalization family surveys (and “surveys of surveys”!) of questionable independence or rigor. Nearly all of this research, much of it produced by “independent living” oriented researchers, unsurprisingly supports the notion that for most…but definitely not all…people with I/DD (again, nothing dx specific) a group home, family, or independent living situation leads to more satisfaction and better community connection than an involuntary, large, congregate state operated institutional setting. I suspect that’s true, but reading more into it than that is an error, as is ignoring the need of individuals and families who don’t do better.

    After studying the research and its stated limitations, I don’t think it’s accurate or reasonable to base any broad policies or statements on it. Our State DDD’s, UECDD’s and advocates of all types all need to do better job developing more specific, accurate and granular data on health, safety, mortality, well being, and community connection for researchers to study and policy makers to rely on.

    People with autism (no matter their individual profile) and I/DD, their families, and our society need a very wide range of voluntary, person centered and adequately funded service options and settings in order to maximize individual outcomes. That’s the only approach that doesn’t create significant collateral damage in the form of abuse, injury and death among people who demonstrate unreasonably high and difficult to manage risks to their own (and others) health, safety, and well being.

  • Rhys

    It is very interesting, no appalling to me that some people have decided that THEY must make the choices for individuals having autism and intellectual disabilities ! This, while claiming that persons with disabilities should be allowed to make their own choices. The choices being made by others apparently exclude where a person wishes to live, how they wish to live and with whom they may associate. How very smart these people are to know what everyone is thinking and feeling. Even better, these important, more knowledgeable people profess the capability to read the minds of individuals who are unable to break their own falls because they lack protective reflexes, select the proper medical interventions because the person in question cannot speak, cannot use any device to communicate and cannot point to what is hurting – can do nothing but sob in pain. It is so nice to know that someone else, other than I, a parent of a dear, lovely daughter I have cared for on my own during her 45 years living with me, has a group of very smart, sensitive, caring and mind-reading people waiting in the wings to take loving responsibility for her, solve the lack of housing, stabilize the ever fluid state budgets and devote themselves toward a reliable stream of national support for our growing population forever. What a relief. Anyone having any doubts are more than welcome to come visit, spend a day – you make all the decisions she is unable to make although I would give my life if she could.

  • Bruce Hall

    Amy Lutz, thank you, once again, for your voice of reason challenging voices who on the one hand speak of choice and housing options, and on the other say, “NO” to any thing resembling an intentional or planned community for our adults with severe autism and I/DD. These decisions must be person centered, and not dictated by self advocates, and groups like ASAN. My sons’ needs are complex, and their severe autism and I/DD will require creative solutions, choices and options-Not limits. I am a person with a lifelong disability, and can live with whom I choose in any setting I choose. My sons’ should have the same rights. And I believe they do under the ADA, Fair Housing Act and Olmstead decision. “The ACLU has embraced a fundamental hypocrisy. In his reply to our coalition, Romero wrote that individuals with disabilities should have “the same choices and freedoms as others.” Yet in the same letter, he reiterates the ACLU’s support for policies that strip this population of those liberties.”

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