The poignant story involved Tim Tullis, a 49-year-old man with autism, who shared a cramped apartment with his 89-year-old father. Tim’s mother died about five years prior and, at that time, Mr. Tullis assumed all of Tim’s care–bathing and shaving him, packing lunches for his day program and enjoying comforting routines.
Video on Youtube:
Lisa Parles Speaking at the 2015 EASI Foundation and Families CCAN Conference
As recounted from the Website of First Place AZ ( https://www.firstplaceaz.org/Links to an external site. ), earlier this decade, the Wall Street Journal reported on the Tullis family. The poignant story involved Tim Tullis, a 49-year-old man with autism, who shared a cramped apartment with his 89-year-old father. Tim’s mother died about five years prior and, at that time, Mr. Tullis assumed all of Tim’s care–bathing and shaving him, packing lunches for his day program and enjoying comforting routines. Every week day, Mr. Tullis had popcorn and water waiting when Tim came home and, in the evenings, they watched Lawrence Welk reruns. Father and son also took great pleasure in their long weekend drives in the country and stops for lunch at their favorite fast-food restaurant. But in April 2004, Tim’s comforting routines came to an abrupt end when he returned home from his day program and Mr. Tullis was gone. How do you break the news to an adult with autism that everything familiar to him is about to change? Within the next 15 years, more than 500,000 Americans with autism spectrum disorders (ASDs) will enter adulthood, based on the rising incidence of the disorder. Conservative projections indicate nearly 400,000. Either way, the numbers are staggering. Today, many adults with autism are being cared for by aging parents who, in most cases, will not outlive their children, leaving them limited options for lifelong support. This growing new subset of the developmentally disabled population – too old for continued support through the special education services of a public school system and too fragile to live without support in the larger world – and their families face a complicated system of vocational rehabilitation services, Medicaid, disconnected government agencies and a lack of appropriate residential care options beyond the obvious ones of keeping them at home or within institutional settings. How do we as a society respond to the pressing question that troubled Mr. Tullis and that’s looming today for millions of parents of children with autism: Who will care for my child when I’m no longer able to do so? The impact that millions of children and young adults diagnosed with autism and other developmental disorders, who are transitioning to adulthood, cannot be overstated. The dramatic increase in the population of individuals with autism gives rise to serious concern among families, service providers, government and the community at-large that residential services for post-school-age adults with autism and developmental disorders must be created as an integral part of a healthy community’s housing plan and opportunities.
To date, there has been an absence of federal entitlement legislation intended to support individuals with developmental disabilities including autism, beyond the end of their 21st year, resulting in a tangle of state-by-state initiatives that are often under-funded, confusing and tend to support outdated or inappropriate models of service delivery to a limited number of individuals. Similar impediments exist in aiding the delivery of quality housing for this population—a situation, which if rectified, could engage private industry, nonprofit organizations and the public sector in providing solutions. While much has been written and discussed, there are no easy answers to addressing the lifelong residential concerns for individuals with ASDs . Autism and other developmental disabilities encompass a wide range of disorders and a spectrum of capacities and needs. Highly individualized protocols for treatment and services are most effective in providing quality personal development and the greatest opportunity for maximizing independence. Unfortunately, the increased prevalence of autism and related disorders has far outstripped the services available to meet the developmental, educational, employment training and life-skills training needs of this population. The estimated wave of individuals with autism spectrum disorders entering adulthood is in addition to the thousands of developmentally disabled and other special needs populations already waiting for a suitable housing solution. Based on 41 reporting states, approximately 88,000 people in the U.S. are already on state waiting lists. This number continues to grow and does not include individuals waiting to be moved from one type of housing to another or those living with aging parents . How will government, the private and nonprofit sectors, and our communities cope with this looming issue in the decade ahead? What options are available to affected individuals and their families?
The following is a brief review of the most common residential models and the sources used to fund them:
RESIDENTIAL MODELS
Adults with autism spectrum and related disorders need lifelong living options that respect and support their rights, individuality and future. These living options also need to empower families and individuals to make good choices and have control and flexibility over support services based on person-centered planning. All residential models should provide a secure, respectful and nurturing environment for residents and day visitors, and promote independence, choice and integration with the community. This can be accomplished, in part, by maintaining uncompromising integrity in the design, development, management, programming and financing of the hard and soft infrastructure. Discussion about housing for special populations can quickly become confusing as features and their definitions vary greatly. Discussions regarding residential options usually take three forms: (1) services in the home; (2) funding for the services and the home; (3) the home design and building type. Programs and services are critical components of all housing for special populations regardless of funding and design. While it is common for the provider of services to control the real estate, a new trend is emerging that separates the two. Increasingly, states are exploring the separation of service provision and control of the real estate to ensure that a person can change service providers to meet their evolving needs without threatening their living arrangements.
PROGRAM AND SERVICE SUPPORT
According to the Organization of Autism Research (OAR) 2009 report commissioned by the New York Center for Autism for Advancing Futures for Adults with Autism (AFAA) and third party sources, a variety of residential housing models exist although not all models are available in all states. The description of program and service support primarily relates to the facility in which the adult with an ASD lives, the number of people who live there, the intensity of staff support provided and the level of community integration. With few exceptions, the housing structure is not tied to the type of services provided. In nearly all cases, however, the expenses associated with operating the programs exceed the cost of the real estate. Six different levels of service and support for residential housing have been identified. They include transitional models, supported living, supervised living, group home living (including teaching family model), agricultural communities/farmstead programs and Intermediate Care Facilities – Mental Retardation (ICG-MR). Brief descriptions follow:
TRANSITIONAL MODELS – Transitional residential programs offer a relatively short term (e.g., one month to two years) residential experience with the expressed goal of transitioning the individual back to their previous environment or a new residence upon completion of the program. Transitional programs generally fall into one of three categories: 1) programs providing intensive, inpatient behavioral evaluation and intervention for individuals with severe behavior disorders, 2) programs providing an intensive life skills course of instruction for individuals who, upon completion of the program, are expected to live independently, and 3) college support programs.
SUPPORTED LIVING – Supported living programs provide residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Among the core tenets of supporting living are that 1) everyone, independent of current skills sets, can benefit from supported living; 2) programming and instruction are directed by the consumer and not by the program; 3) to be effective, communities of support must be built around the person and promote their involvement, and; 4) smaller numbers result in greater levels of community integration. Supported living is designed to foster the individual’s full membership in the community as they work toward their long-term personal goals. SUPERVISED LIVING – Supervised living is a residential model designed to provide services to individuals with ASDs with greater oversight and direction than might be provided in a supported living context but less than group home living. In supervised living, the homes may be self-owned or leased. Although individual residences may be small (generally no more than one or two adults with autism per residence) there may be a number of such residences scattered throughout the apartment building or housing complex allowing for greater staff accessibility and oversight.
GROUP HOMES (SUPPORTED AND SUPERVISED) – With the onset of deinstitutionalization came the movement of individuals with ASDs and other developmental disabilities from large, congregate care facilities to smaller, more typical homes in the community. Group homes exist in every state. They are small, residential facilities (i.e., actual homes) located in the community and designed to serve children and adults with ASDs, intellectual disabilities or other chronic conditions. Typically, group homes have eight or fewer occupants and are staffed 24 hours a day by trained agency staff. Ownership of the house usually lies with the provider agency (as do staffing decisions) and not with the residents of the house. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. As such, instruction in daily living and self-help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, showering, dressing and appropriate social interactions are provided by the agency staff.
INTERMEDIATE CARE FACILITY – MENTAL RETARDATION (ICF-MR) (INSTITUTIONAL) The ICF-MR is a residential program that was established in 1971 by the Federal government as an optional Medicaid service. The funding for this facility-based program, which includes both the facility and the support services, stays with the facility, not the person. Programs range from large congregate settings to those which are community –based and sized much like a group home. The underlying philosophy is that individuals with developmental disabilities can continue to learn and develop skills when supported by adequate programs and services tailored to their individual strengths and needs. The ICF-MR is responsible for providing active treatment, consistent training and health support allowing individuals to maximize their independence. Currently, all 50 states have at least one ICF-MR facility. The ICF-MR has traditionally served individuals with complex needs and who are medically fragile and multi-challenged. There has been a shift away from the development of new ICF-MR facilities and a transition to more person-centric funding models.
AGRICULTURAL AUTISM COMMUNITY/FARMSTEAD PROGRAMS (SUPPORTED AND SUPERVISED) Agricultural autism community, or farmstead programs, are proven hybrid models that generally combine residential living arrangements, typically in several single-family homes or individual apartments in multi-unit dwellings located on site or in nearby locations, with stable agricultural science and community-based employment. A few of the communities are residential only. Most offer day programs, job training and employment both on- and off-site for adults with autism who live with their families in nearby areas. Occupations are chosen by residents according to their individual preferences and skill levels. Vocational training and generalized life skill instruction is also provided. The employment options are varied and flexible, but some adults choose specialization (e.g. farmer or greenhouse manager, cook, store or office manager, mechanic, computer specialist, as in any typical community). Recreational and leisure activities are abundant and accommodate all lifestyles, including very active ones. This combination of housing and flexible, stable, individualized and meaningful work in a non-urban setting is appealing to many adults with autism and their families. Many communities start with families coming together to create a model. Waiting lists at all of the communities are long and openings are rare. Most models are located in rural, exurban, suburban and urban locations, which are chosen for their proximity to small towns and large cities. These “near to town” (many within walking distance) locations enhance integration into the larger community through many available activities, including innovative community supported agriculture (CSA) programs, greenmarket and food bank initiatives, and partnerships with other community-based nonprofits and faith-based groups. Existing programs are located throughout the country. The financial profile of agricultural autism communities varies, including privately funded operations, historic ICFMR and DD licensed facilities, wavier-based operations or combination of these funding mechanisms. The recent trend in newer communities is toward person-centric funding. Although demand for this model far exceeds availability, significant financial and bureaucratic challenges impede wider proliferation of the agricultural autism community model. People with autism spectrum disorders are like fingerprints. We need to respect their differences. We need to think beyond what’s currently available.” –2009 AFAA National Town Hall
SERVICE PROVIDER CHALLENGES – The ability of any program or agency to provide quality services to adults with ASDs rests, at least in part, on the ability of the program to attract qualified, professional staff. Unfortunately, and with certain exceptions, the issue of staff recruitment and retention has proven to be a difficult one for many programs providing services to adults with ASDs. Salaries for residential staff are low. The work is hard, hours are long and the prestige, limited. The potential crisis is further complicated by an absence of training, supervision and any state or federal credentialing standards for adult services professionals. The U.S. Department of Health and Human Services (2004) reports the combined, annual staff turnover rate for programs serving adults with developmental disabilities is 50 percent. In addition, such programs report an ongoing staff vacancy rate of about 10 to 11 percent. Inexpensive housing in various forms could be widely available; however, without confidence in a service provider, families are reluctant to allow individuals with autism to live an independent life until the situation reaches a crisis level. In addition to providing therapy and care giving, families also want service providers to assist with transportation, ensure the resident’s safety and security, support cleaning and meal preparation, and generally look out for the individual’s well-being. These expanded services may be provided in a similar manner to apartments and dormitories with concierge services. To be scalable, these support services must be offered by larger, regional or national organizations. National dormitory (student housing) and multi-family management companies may be interested in expanding to manage services for individuals living with autism. Local community-based organizations with growth capacity may also be interested in expanding to provide services. To be cost efficient, support service providers must take advantage of the economies of scale and be focused on this population. To be effective, they must provide credentialed staff who are supported through training, compensation and opportunities for career advancement, thereby reducing the historically high rate of turnover for caregivers and leading to a greater continuity of care for adults living with ASD.
Today, the number of housing choices for adults living with autism spectrum and related disorders is extremely limited. Current financing options, both public and private, have been insufficient in size and scope to support the creation of appropriate housing at scale for the current population, much less the anticipated growth. While the quality of government-funded affordable housing programs is actually quite high (i.e. Low Income Housing Tax Credits, HUD 811), they meet only a fraction of the demand for low-cost housing in this country. Government programs vary from region to region and are often insufficient on their own to make a project work, leading mission-driven developers to assemble a patchwork quilt of local resources to get to the finish line. This assembly takes a tremendous amount of time and is rarely replicable, even within the same community. In addition, due to the small size of these government programs, accessing this funding is highly competitive, translating into greater risk for developers to pursue. Until structural problems are addressed, the current model will not support the demand for housing. The following includes a report on current housing options, existing capital sources and alternative means for funding.
GROUP HOMES – By far the most prevalent residential service programs are community-based small group home settings operated by either nonprofit or for-profit organizations under contract with publicly funded organizations, either government agencies or nonprofit intermediaries. These facilities range in size from very small (1- to 2-person) homes to larger group residences with 12- to 14-person capacity, with most being in the 6- to 8-person range. The intent is to have these facilities integrated into the community close to families and community services that play an important part in the residents’ ongoing support system. Each person typically has an individualized service plan (ISP), but the nature of group living often results in a modified service package with residents receiving group services as well as some individual service programming. Funding to operate the group homes frequently comes from a variety of resources, often a combination of resources from the served individuals (pensions, SSI benefits, etc.), public funds from Federal Title XIX (Medicaid for medically necessary services) and state matching funds from non-Title XIX costs, such as residential services. Residents effectively are controlled by the state, which directs the resident’s income, provides a minor stipend to the resident for personal necessities and provides contractual funding to the group home provider for all of the resident’s housing, living and service costs. These group home settings are often in leased facilities which are subject to the whims of the real estate market and do not provide permanent, long-term housing options that are controlled by the system which is paying for them. While some group home sponsors have been able to purchase their facilities through nonprofit entities accessing public affordable housing funds, most remain leased and pose a threat to the long-term availability to the growing ASD population. In Arizona and other states, simply rising to the top of the waiting list does not assure placement in the next available slot. If an individual and/or his family is in a crisis, which may involve medical, financial or safety concerns, then that individual may “jump the line.” Making that determination for an individual with an ASD should be based on criteria developed by experts in the field.
SEMI-INDEPENDENT AND TENANT-BASED OPTIONS – Semi-independent living models of supportive housing exist, but on a small scale. Unlike the traditional group home model that is funded through fee for service contracts supported through public dollars, these facilities separate the rental housing payment component from the funding for individualized supportive services. Typically, in these models, the resident pays rent, usually based on a percentage of their income; receives services based on their eligibility for publicly funded individualized services; and can choose to not receive services at their discretion. For low-income individuals with disabilities, who have the personal and/or the financial capabilities to live independently, with the availability of individualized supportive services as needed, several housing options are available on a limited basis. Tenant-based rental assistance programs allow qualified program participants to choose apartments of their own provided the landlord is willing to accept rental assistance payments. For example, the landlord receives payment from SSI, which is approximately 30 percent of the tenant’s allotment, and the balance of the rent is to be paid from public funds through vouchers.
ASSISTED RENTAL APARTMENT COMPLEXES The third category of independent housing options for low income individuals with disabilities lies in assisted rental apartment complexes. Traditional public housing units, while limited in unit availability for single individuals, provide potential for affordable housing for disabled persons. New public housing units are not being developed, but there is a large inventory of existing units in many communities. There also exists a limited number of existing apartment complexes that receive project-based Section 8 rental assistance whereby qualified residents pay 30 percent of their income as their rental payment, and HUD pays the difference to the landlord. While new units are not being built under this program, many apartment complexes still exist with this assistance. Public policy considerations that do not allow for the congregating of special needs populations and basic economic considerations typically limit the number of set aside special needs units from 10 to 20 percent of the total units in any project, if the developer/owner is willing to set aside any units at all. CAPITAL & FUNDING SOURCES Capital is the most complex issue facing organizations involved in the land purchase, facility construction or renovation, and ongoing operations of residential properties for special populations. It also represents the greatest obstacle to scaling projects and replicating successful models which would respond to the anticipated surge in market demand.
FINANCIAL FRAMEWORKS: FOR THE SERVICES AND THE HOME OVERVIEW OF FUNDING SOURCES – Based on properties evaluated by ASU through their case studies, as well as additional research of innovations in this sector, projects are frequently developed based on the constraints and design demands of the available financing versus the model typically used in a capital market transaction: create a model for the housing product that responds to market demand, then search for a capital source to finance it. Beyond the initial project capitalization, additional phases of project financing have been required for virtually all the properties included in this study: • Land acquisition, design and construction • Property maintenance and management • Services and soft infrastructure.
The following are major capitalization categories:
LARGE DONOR/CHARITABLE ORGANIZATION MODEL A single donor or multiple donors contribute the construction/acquisition funding through a 501(c)(3) organization that serves the developmentally disabled population. Pros: Perhaps the simplest model from an execution perspective, it does not require ongoing government compliance and the asset can stay with the nonprofit in perpetuity. Cons: A highly unreliable source of revenue; cause and relationship related, which prevents the creation of a consistent funding source for replication and scale.
PRIVATE PAY Families with resources pay for all services and the facilities together with other families. Pros: Provides a model which is quickly executed once the decision is made by the family(ies). Cons: May not provide for social integration with other populations; only affordable to a small segment of the total ASD population.
LOW INCOME HOUSING Federal and state funds are granted to construct housing for low-income and special needs populations. Pros: By far the greatest single source of funding, this resource has the potential to allow for the scale needed to meet projected needs. Cons: Complex process which takes years to complete; funds are inadequate to meet the total need; high compliance issues throughout the life of the project.
GOVERNMENT FUNDED AND OPERATED INSTITUTIONS Individuals are placed in state housing based on availability. Pros: Housing and supports are combined, no fundraising required. Cons: Families have no say as to location and proximity; space is limited; long waiting lists; quality of care is inconsistent. Although there are a variety of sources for capital funding, organizations most often use two to three sources to cobble together a workable financial model for the projects.
MEDICAID/TITLE XIX AND SUPPLEMENTAL SECURITY INCOME (SSI) Federal entitlement funds paid to the service provider (Medicaid) or directly to the recipient (SSI), these funds are intended to cover the ongoing housing and care for the individual with a disability. Pros: As entitlement funds, all qualified individuals receive them without concern for market conditions. Cons: Funds are inadequate to cover housing costs and SSI funding can be reduced or eliminated if the individual earns a modest income. (Refer to Table 5-1 .) Accessing private equity challenges even the most patient developer or nonprofit. In today’s extremely tight credit market, seeking bank funding or underwriting will require a balance sheet that would appear not to need the credit.” — Pat Gilbert, Marc Center
CHARITABLE MODEL AND PRIVATE-PAY ANALYSIS Perhaps the most commonly used form of funding, private funds from foundations and individuals find their way to housing and support services for persons with disabilities through grants and contributions to a variety of housing and service providers. Major gifts of real estate to nonprofits help donors avoid taxes on capital gains, eliminate estate taxes on the property and provide a federal income tax deduction. In addition, families and friends of individuals with special needs can make tax deductible contributions to charitable organizations to advance the overall support of the population. In 2004, the Maricopa Association of Governments (MAG) in Arizona reported a total of almost $18 million from foundations and private donors for housing services. In 2007, the Arizona Community Foundation (ACF) launched the ACF Fund for Affordable Housing. One of the main reasons cited for starting the fund is because 19 percent of individuals with disabilities in Arizona live below the poverty line.
LOW INCOME HOUSING AND PUBLIC SUPPORT OPPORTUNITIES – Federal spending for community services for the developmentally disabled has more than tripled since the Americans with Disabilities Act passed in 1990. Yet federal money only covers a portion of what states need. While there are some minimum federal standards for the disabled, it is largely up to each state to determine what other services it will offer and how much it will spend. Federal and state funding models can be complex, and require significant planning and administration on the part of the organization. The major categories for government funding include: HUD SECTION 811 Provides interest-free capital advances to nonprofit sponsors to develop rental housing for low-income persons with disabilities. LOW INCOME HOUSING TAX CREDIT (LIHTC) Allows qualified for-profit and nonprofit developers to apply, on a state-by-state program, for federal tax credits that they can sell to investors and use the proceeds as equity for the development of apartment complexes for persons below 60 percent area median income. HUD SECTION 202 Similar to 811, this program is available only to nonprofit organizations that target both low-income seniors and frail elderly by providing capital advances to finance the construction, rehabilitation or acquisition of structures, and also provides rent subsidies for the projects to help make them more affordable. HOME PROGRAM Provides formula grants and loans to state and local participating jurisdictions to expand housing opportunities for low and moderate income individuals and households. COMMUNITY DEVELOPMENT BLOCK GRANT (CDBG) Grants to jurisdictions which can be used to support affordable housing through land acquisition and infrastructure development. HUD SECTION 811 HOUSING CHOICE VOUCHERS (HCV) Dispersed directly by HUD to persons with disabilities to spend on the housing option of their choosing. HUD SECTION 8 HCV Also a voucher program for individuals with incomes below 60 percent of the area median income, including disabled persons. GOVERNMENT FUNDED AND OPERATED INSTITUTIONS The 1990 Americans with Disabilities Act as well as the Supreme Court’s Olmstead decision found that it is medically unjustifiable to institutionalize persons with disabilities who want to live in a community setting. Further, states have a legal obligation to remedy this situation. States like California are working to comply with these laws by decommissioning state institutions and moving occupants into small, community-integrated living arrangements. This trend has been a positive one for the residents, but has not offset the demand for high-quality solutions for special needs populations. In models where a service provider owns the home and is not providing quality care, the person with the disability has to move out, creating housing instability and inconsistency. These issues are magnified for people living with autism where establishing a routine and building long-term relationships are so crucial.” — Mardie Oakes, Hallmark Community Solutions
Taken from : “Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders,” and the accompanying report, “Advancing Full Spectrum Housing: Design for Adults with Autism Spectrum Disorders,” have been made possible by a grant from the Urban Land Foundation through funding provided by the Pivotal Foundation and the Southwest Autism Research & Resource Center.
READINGS AND OTHER MATERIALS IN SUPPORT OF THE ASSIGNMENTS:
PLEASE READ/VIEW THE MATERIAL IN THE ORDER PRESENTED AS THE INFORMATION BUILDS UPON EACH OTHER. SIMPLY CLICK ON THE LINK TO ACCESS TO THE ARTICLE/VIDEO:
Read the Following:
1. Tincani & Bondy Chapter 12
2. Olmstead Movement: https://www.olmsteadrights.org/about-olmstead/#Brief%20History%20of%20OlmsteadLinks to an external site.
3. Who Decides Where Autistic Adults Live – The Atlantic:
WHO DECIDES WHERE AUTISTIC ADULTS LIVE?
For many intellectually and developmentally disabled people, large campuses or farmsteads may be better options than small group homes. But new state laws could make it hard for big facilities to survive.
By Amy S.F. LutzLinks to an external site.
n December 2014, I watched 24-year-old Andrew Parles fit wood shapes into a simple puzzle in the new vocational building at the Bancroft Lakeside Campus, a residential program in New Jersey that serves 47 adults with autism and intellectual disabilities. The task wasn’t challenging for Andrew, but his team was taking it slow: Andrew was still recovering from surgery after detaching his own retinas through years of self-injurious behavior. A staff member stood nearby—not hovering, exactly, but close enough to intervene if Andrew suddenly started to hit himself in the head. His mother, Lisa, was hopeful that he’d soon able to participate in the programs he had enjoyed before his surgery: working in Lakeside’s greenhouse, painting in the art studio, delivering food for Meals on Wheels.
I toured the campus, admiring the cathedral ceilings and brightly painted exteriors, thinking how perfect a place like this would be for my 16-year-old son Jonah, who is also severely autistic and will require round-the-clock supervision his entire life. Lakeside likely won’t be an option for Jonah, because we don’t live in New Jersey, but soon it may not be an option for Andrew, either. In 2014, the federal government asked each state to define exactly what types of vocational and residential settings would be eligible to receive federal funding. Large group homes, farmsteads, and campuses like Lakeside all face possible exclusion.
Congregate settings for people with intellectual and developmental disabilities (I/DD) have been discouraged for years. During the 1960s, around the time Ken Kesey published One Flew Over the Cuckoo’s Nest, patient advocates began rejecting the idea of the mental institution, arguing that people with disabilities should and could live in their communities. Since that time, the institutionalized I/DD population has dropped by more than 80 percent.
It seemed pretty simple: community good, institutions bad. But these two terms have proven extraordinarily difficult to pin down. Is the difference merely one of size? In 2011, the National Council on Disability defined “institutional settings as housing situations in which more than four people with I/DD” live in a single home. Some autistic people and their families have embraced this definition: The four-person size limit was included in “Keeping the Promise: Self-Advocates Defining the Meaning of Community Living,”Links to an external site. Open this document with ReadSpeaker docReader a 2011 paper jointly issued by three self-advocacy organizations.
In some states, this guideline is poised to become law, which means such congregate settings may all be excluded from the waiver program. This could prove disastrous for the autism community, which is facing a housing crisis that is only expected to get worse. Right now, 80,000 autistic adults are on waiting lists for residential placements that can be up to 10 years long, and the nonprofit advocacy organization Autism Speaks estimates that half a million autistic children will transition to the adult state-by-state funding system over the next decade. Shortages aside, there are plenty of parents who feel that large facilities like Lakeside are truly the best places for their children and bear no resemblance to the institutions of the mid-20th century.
This sounds like a technical debate, and one limited to a very specific community, which may explain the public’s relative lack of interest. But it touches on a larger question: While many Americans may never need food stamps or unemployment, virtually everyone eventually benefits from Social Security and Medicare. What level of control should the government have over how these subsidies are used? In the case of disabled adults, who should decide what kind of housing best suits their needs? Should it be those individuals and their families, or should it be the state?
Andrew Parles in his room at Lakeside, a New Jersey program that provides care and housing for 47 adults with autism and intellectual disabilities (Neal Santos / The Atlantic)
There’s no doubt that in the past, state schools and asylums were frequently rife with abuse and neglect. Clips of Geraldo Rivera’s 1972 expose on the Willowbrook State School can still be found onlineLinks to an external site. A black and grey play button Description automatically generated, as can truly horrifying facts about that facility: 6,000 intellectually disabled children crammed into a building designed for 4,000; staff ratios as low as one employee for every 40 residents; kids subjected to medical experimentation on the treatment of hepatitis A, which ran rampant through the wards because of poor sanitation.
That documentary, and the class-action lawsuit that followed, ushered in an era of policy changes. The Civil Rights of Institutionalized Persons Act of 1980 led to more thorough investigations of abuses, and the Americans with Disabilities Act of 1990 helped protect the rights of the mentally and physically disabled. In the 1999 case Olmstead v. L.C., the Supreme Court ruled that forcible institutionalization violated the ADA.
The Olmstead case did something more, too: It required states to support disabled individuals so they could stay in mainstream society. It took several years, but in 2007, Medicaid began offering Home and Community-Based Services (HCBS) waivers, an alternative funding stream for those who “waived” institutional care. These waivers now help pay for the housing and care of nearly 1,000,000 people with disabilitiesLinks to an external site. Open this document with ReadSpeaker docReader .
In January 2014, the Center for Medicare and Medicaid Services (CMS) issued a “final rule” describing how the waiver program would operate under the Affordable Care Act. That document didn’t disqualify any particular housing models. In fact, it noted, “It is not the intent of this rule to prohibit congregate settings from being considered home and community-based settings.”
But two months later, CMS issued a “guidance bulletin” to help states decide which settings should be deemed too institutional to participate. This document specifically cited farmsteads, gated communities, residential schools, and clustered residences as too isolating. The bulletin allowed for some of these settings to be approved through a process called “heightened scrutiny.” However, several states seem inclined to draft policies that are more restrictive than these federal guidelines.
MassachusettsLinks to an external site. Open this document with ReadSpeaker docReader , for example, has opted to categorically exclude any settings that house more than five people; New JerseyLinks to an external site. Open this document with ReadSpeaker docReader crafted a density rule mandating that no more than 25 percent of the units in any development or apartment building be occupied by waiver recipients. So far, these are just proposals: The states are required to consider public feedback, and at the hearings I attended in New Jersey, so many parents and providers opposed the plan—which, like Massachusetts’, also eliminated large settings—that Governor Christie has already sent it back to the state’s Division of Developmental Disabilities (DDD) for revision. It’s unclear what the final versions of these policies will look like.
In Pennsylvania, the Office of Developmental Programs has restricted group homes to four people since 1996. This is a frustrating and arbitrary limit for Stacy Levitan, the executive director of Judith Creed Homes for Adult Independence (JCHAI). Her Philadelphia-based non-profit provides a range of services for approximately 100 adults with intellectual disabilities, including operating 15 community-based, supported apartments and three six-person group homes, which were grandfathered in because they were licensed before the restrictions were introduced.
It seems pretty simple: community good, institutions bad. But these two terms have proven extraordinarily difficult to pin down.
“There’s nothing institutional about our homes,” said Levitan. “Our residents come and go as they please, they have their own rooms with doors that lock, they don’t have to sit down for meals together at the same time—although many times they do, because they enjoy it.”
I had dinner at one of the JCHAI homes with Levitan’s brother, Doug, who has Down Syndrome, and his housemates. I spent much of the evening talking with Jacob, an autistic 32-year-old who could have chosen to live in one of the JCHAI apartments but picked the communal house instead. I tried to talk to him about his decision, but, despite his relatively high level of functioning, he still exhibits many of the core deficits of autism. He perseverated on the directions between different locations: the different ways I could have driven to the JCHAI home from my house, for example. But through our conversation about transportation I learned a lot about how Jacob spends his time: working at T.J. Maxx, volunteering at the Jewish Relief Agency, going to the movies. The next day, he was planning to take the train to his ex-girlfriend’s 30th birthday party.
Jacob did list one advantage of living in the house that had nothing to do with its proximity to various destinations. “I get to hear Alex’s jokes and riddles,” he said, holding his hand out so his housemate could slap it. Alex told me a joke, too, but his speech is very difficult to understand and I didn’t want to keep asking him to repeat it, so I just smiled. Jacob had no problem; he laughed and held out his hand for another high-five. They slapped hands all evening: over Alex’s new television, the birthday bash for Elvis Presley scheduled for that weekend at the American Music Theater, the brownies served after dinner.
Levitan doesn’t want to think about how Jacob, Alex, Doug, and their housemates would react if JCHAI had to sell their homes and force everyone into apartments. “Right now, if one of our residents moved out, whoever moved in would probably have to be private pay,” Levitan said. “We could fill several more houses if we could get funding for six-people homes, but we can’t.” Four-person homes cost too much to operate for an organization that—on top of the waivers and out-of-pocket fees it collects—needs to raise $375,000 every year just to break even.
Residents in the art room at Lakeside.
A common concern about congregate settings is that they may be “so lovely when they start out,” said Nancy Thaler, the executive director of the National Association of State Directors of Developmental Disabilities Services. “They’re pretty good while the founding families are still around. But when professional management comes in, that’s when institutional issues, like neglect and abuse, come up.”
Thaler has an impressive 40-year history working with disabled individuals, a decade of it in public institutions. Between 2003 and 2006, she worked for the Center for Medicare and Medicaid Services, where she led the development of the waiver program. She is also the mother of an adult with developmental disabilities, whom she adopted as a 7-year-old from one of those institutions. Based on what she’s seen, she has concluded that congregate settings restrict choice, control, and individualized programming. As a facility gets larger, she says, it unavoidably starts to “segregate and isolate.” To her mind, this is what makes it an institution.
“It’s hard to be person-centered when you have large groups of people,” she told me. The phrase “person-centered” represents the aspirations of Thaler’s field: The CMS’s final rule used it 272 times, calling for individualized service plans that would detail each recipient’s desires and needs, giving them and their families more agency.
People with intellectual and developmental disabilities are certainly vulnerable: One studyLinks to an external site. Open this document with ReadSpeaker docReader found that almost 70 percent of autistic adults have been abused. A huge part of the problem is “the lack of quality, quantity, and accountability in direct care staff,” said Desiree Kameka, the acting national coordinator of the Coalition for Community Choice, a network of more than 85 organizations advocating for adults with autism and related developmental disabilities. Direct-care positions involve a huge amount of effort and complexity, yet the qualifications frequently end at a GED and a driver’s license. And these jobs are very poorly compensated: 45 percent of workers live below the poverty line. Unsurprisingly, given these factors, the field has a 70-percent turnover rate.
However, Kameka points out that this issue affects every individual who receives support. “Even when living in their own apartments, people can be dehumanized through words or actions and involuntarily segregated by support staff. Physical locations don’t do this, people do.” In 2011, The New York Times reportedLinks to an external site. that more than 1,200 developmentally disabled individuals had died of “unnatural or unknown causes” in New York group homes alone over the previous decade. In Georgia in 2013, 10 percent of those who had been moved to community settings died following their relocation.
Lisa Parles—a disability attorney who has spent years advocating not only for her own son, Andrew, but hundreds of others like him—feels that neglect and abuse are less likely to happen at Lakeside, precisely because of its size. “Andrew was at a group home before, and it did not work for him,” she told me. “If staff would call out or not show up, you either had overworked, exhausted aides who had to stay, or substitutes sent over by the agency who knew nothing about him or how to handle his self-injury. At Lakeside, he knows everybody. There are so many eyes on him. And if there’s a crisis, there’s always other staff around who can very quickly come help.”
One study found that almost 70 percent of autistic adults have been abused.
Ari Ne’eman, the founder and president of the Autistic Self-Advocacy Network, has a very different view on safety. Ne’eman himself has autism-spectrum disorder and is one of the most influential members of that community: In 2010, he became the first autistic person to serve on the National Council on Disability. Although he faced bullying after transferring from a segregated special-education program to a mainstream school, he’s outspoken about his belief that autistic individuals fare better when they’re integrated into the wider community
“You need meaningful relationships with those who don’t have a custodial arrangement over you and no incentive to cover up abuse,” Ne’eman said. He told me about one autistic man who went to the same pizzeria every day with his care worker. When he couldn’t go for a few days because of an illness, the owner of the pizzeria called to check in on him. Ne’eman’s conclusion: “Safety is brought about by the opportunity to participate in the greater community and have relationships with people who can notice.”
Craig and Lisa Parles moved Andrew to Lakeside after having a negative experience at a small Group home. “At Lakeside, he knows everyone, Lisa said. “There are so many eyes on him”.
But what, exactly, constitutes a community? This question is at the core of the debate over HCBS waivers. Consider Misericordia, a Chicago facility that treats 600 residents with a range of developmental disabilities and has over 400 families on its waiting list. Misericordia offers an extensive array of therapeutic services, including occupational, physical, and speech therapy. Its 31-acre campus has a greenhouse, a gym, a bowling alley, computer labs, and a swimming pool where the Special Olympics team practices. Residents can work in the bakery, the horticultural center, the recycling program, the commercial laundry, or the restaurant.
They also have a number of opportunities to interact with people off-campus. Residents are employed at local supermarkets, Loyola University, and U.S. Cellular Field, where the White Sox play. Those who like music can participate in two groups that perform all over Chicago: One is a dance troupe and the other combines singing and sign language. The artistically inclined can spend their time in various multimedia studios, creating ceramics and jewelry to sell in the gift shop or paintings to display at an annual exhibition at the Art Institute of Chicago. Misericordia also operates seven nearby homes for waiver recipients who don’t need the 24-hour care required by most on-campus residents.
Is Misericordia an institution? For financial purposes it is considered one: Most residents are funded not through the HCBS waiver but through the much older Medicaid benefit for Intermediate Care Facilities for Individuals with Developmental Disability (ICF/DD). Still, residents and their families bristle at the word. “It’s not like living in an institution,” Bob Bourke told me. His 29-year-old daughter, Molly, who has Down Syndrome, has been living there for the past eight years. “Misericordia is a far deeper and richer community than we could create for Molly,” Bourke said. “She’s part of a variety of communities, actually: One is the Heartbreakers [the dance troupe], one is her housemates, one is the other houses she visits for barbecues and parties. If she didn’t have Misericordia, she wouldn’t have access to any of that.”
“Misericordia is very much a community,” agreed Gail Schmidt, whose son Dave, 26, has Fragile X syndromeLinks to an external site. . “The campus atmosphere is like a college. There’s a collegiate, small-town community feeling.”
Many parents and providers I spoke to at congregate settings across the country prefer the term intentional community, which likens a place like Misericordia to any planned residential development in which people choose to live together because of certain shared characteristics. That sense of common ground is what’s often lacking when individuals with I/DD live in integrated housing, surrounded by neighbors who don’t understand them.
In an era when 50 percent of Americans don’t even know their own neighbors, living in a small home can be especially isolating for a person with I/DD. Micki Edelsohn, the founder of the Delaware non-profit Homes For Life, built her first group home in 1989 for four men, including her son Robert, 42, who has an intellectual disability due to a birth injury. Since then, she has established 25 similar homes all over the state, as well as several completely integrated apartments that meet the most stringent interpretation of the CMS final rule. Her verdict?
“Community integration is a myth,” she told me. “My homes are in nice neighborhoods—do you think the neighbors are asking the residents over for barbecues or to go to the movies? Of course not. There has been no real interaction between the neighbors and the people living in the homes besides the occasional wave.” After building group homes for a quarter of a century, Edelsohn told me, “Before I die, my son will be in an intentional community.”
Personal Lockers at Lakeside
Even advocates of community integration agree that developing meaningful relationships with non-disabled neighbors can be “a challenge,” as Ari Ne’eman put it, and this is especially true when it comes to the most severely afflicted. It’s not a small group: A 2013 study found that over half of autistic kids exhibit aggressive behaviors, which vary in intensity but can be very difficult to treat and tend to continue into adulthood.
Perhaps it was this population that Supreme Court Justice Ruth Bader Ginsburg was worried about when she carefully crafted her opinion in the 1999 Olmstead case to make it clear that community inclusion might not be right for everyone. Such integrated settings, she wrote, should only be required “when the State’s treatment professionals have determined that community placement is appropriate” and “the transfer from institutional care to a less restrictive setting is not opposed by the affected individual.” In other words, forcing developmentally disabled individuals into dispersed community settings that don’t meet their needs is as much a violation of Olmstead as forcing them into institutions.
Dennis Rogers founded Safe Haven Farm in Ohio in 2009 after buying two different houses for his autistic daughter, Emily, now 34. “Our goal had always been for Emily to live in the community, and we set her up exactly as we had envisioned—in her own house, with a roommate, and staff to help her participate in different activities,” Rogers said. None of this worked out as planned.
“The first house we bought was next door to a couple who had a puppy Emily loved. It got to the point where Emily would sneak away from her staff to go look for the puppy. The couple refused to lock their front door, so Emily would just walk right in. We begged them to lock the door so we could teach her not to do it, but they refused.”
This didn’t mean, however, that the neighbors welcomed Emily’s visits. “One time, the husband—he was a policeman, if you can believe it—met Emily as she was opening the door and slammed it on her hand, smashing her fingers. Her staff found her sitting in their driveway, covered in blood. Then the neighbors sent us a bill for $1,000 for damage to the door.” After that, said Rogers, “We just moved. It wasn’t worth it.”
Emily lived in the second house the family bought for six years. “She didn’t have one interaction with a neighbor during that time, good or bad,” Rogers said. “We learned that the human community is all that matters, not the physical community.”
Like many individuals with autism, Emily also has profound auditory sensitivities. Rogers wanted her to go out and be active, with the help of an aide. “But most places were too loud for her to tolerate. We found a good sheltered workshop [a day program where low-functioning disabled people can do small jobs or crafts], but it had 100 people and concrete floors, so it was just too loud. After two days, she started attacking the staff in the van if they tried to take her there.” Rogers and his wife decided to enroll her in a group program that took participants to malls, parks, and restaurants. “But Emily had so much anxiety, she wouldn’t go into any buildings,” Rogers said. “She has a phobia of ceiling fans, she can’t stand hearing people cough or clear their throats. She would agree to go to the park, because she likes the swings, but after a few minutes she would want to go home.”
Rogers said Emily ended up spending two years sitting in the basement of her house watching the same five minutes of the movie Speed over and over. “Her behaviors escalated, the police were called, and twice she was taken to a psychiatric hospital and locked up for over a week,” Rogers said. “It was very traumatizing. Each time she came out worse. After her second hospitalization she was discharged on antipsychotics, antidepressants, and antianxiety meds. It was at that point that my wife and I decided this was no way for Emily to live.”
Rogers was familiar with Bittersweet Farm, the first farmstead created for people with autism; it was just a couple of hours north of the Rogers’ home in Whitehouse, Ohio. Thirty-two residents live there on 80 acres, where they care for animals, weave placemats and rugs to sell, and work in the fields and greenhouses, which yield enough produce for a community-supported agriculture program that provides weekly boxes to a hundred local families. Since Bittersweet was founded in 1983, more than 35 similar farm-based opportunities have been built around the country for this population. Rogers thought Emily might do well in such a tranquil environment.
Emily ended up spending two years sitting in the basement of her house watching the same five minutes of the movie Speed over and over.
To focus on creating Safe Haven, Rogers retired from his job as a general manager for General Electric. “First it was a need, then it became a passion,” he said. “Someone has to be the champion. My corporate background gave me a lot of the skills necessary to coordinate a big project like this. I determined my purpose wasn’t to help GE make more billions; they can do that without me. This became my purpose, to maximize Emily’s quality of life.”
After three years of planning, the farm opened in May 2010. Rogers said Emily is thriving there. She picks pumpkins all autumn long and takes them back to her room to paint. She spends a lot of time with the animals—Safe Haven has alpacas, chickens, and dogs, but Emily especially loves the miniature horses, which she calls “horse puppies.”
Emily’s maladaptive behavior levels have dropped, and her parents are starting to wean her off her medications. Even her auditory sensitivities no longer seem so acute. “We have dances once a month, and she’ll come, even though it’s loud and crowded,” Rogers said. “And she would never go into public pools because she couldn’t stand the lifeguard whistles. Now she loves swimming in our pool.”
Emily and the other residents don’t spend all their time on the farm. “Emily still goes into town and does everything she ever did when she lived there,” Rogers said. “She’ll go into small stores, like the Dollar Store, or go through a drive-thru for fast food. She comes to our house for lunch once a week. She likes to go see trains and she loves to get coffee. We’re not isolating anybody.”
Of vital importance to Safe Haven’s success is the support it enjoys from its state’s lawmakers—so much so that in January of this year, 14 of Ohio’s Congressional representatives, including Speaker of the House John Boehner, sent a letter to Health and Human Services Secretary Sylvia Burwell urging CMS not to take any action that might threaten farmsteads, which, they wrote, “provide unique support for individuals with autism, enabling them to maximize their potential.”
Compare Emily’s story with that of Tyler Loftus, a 23-year-old from New Jersey. Diagnosed with autism, intellectual disability, and bipolar disorder, he also suffers from aggressive and disruptive behaviors that resulted in his placement at the Woods School in Pennsylvania when he was 14 years old. “For four or so years before that, he was going to the ER five times a week in a cop car, where they would keep him in four-point leather restraints until the Haldol kicked in,” his mother, Rita O’Grady, told me. “I was a single mother, working three jobs at times to pay for all Tyler’s therapies. There was no way I could handle him.”
Loftus did well at Woods, and O’Grady assumed he would transition to the adult program there when he graduated. But in 2010, the New Jersey Division of Developmental Disabilities began moving out-of-state people with I/DD back through its Return Home New Jersey program. Just before he turned 21 and his educational entitlement ended, Loftus was relocated to a supported apartment. It was the first of five community placements where he would fail over the next two years. “When Tyler eloped or got aggressive, all the staff could do was call 911,” O’Grady said. “The cops would come, and take him to the ER for a psych eval. This happened every day, sometimes more than once.”
Tyler Loftus’s story made the headlines after September 18, 2014, when he was picked up by a police officer for running away and arrested for carrying a three-inch pocket knife. The prosecutor wanted to drop the charges immediately, but couldn’t because there was no place for Loftus to go—the director of the agency that managed the group home he lived in at the time showed up at the arraignment to inform the judge that Loftus had been officially evicted. As a result, this young man with the cognitive capacity of a 5-year-old spent almost three weeks in jail.
The state finally arranged for Loftus to be released to an emergency group home on October 6, but that placement didn’t last even one day. “As soon as we got there, Tyler started flipping out,” O’Grady said. “He kept saying, ‘I’m not staying here, I’m not staying here.’” He ended up at Trinitas Hospital, on the only unit in the entire state that treats individuals with autism and intellectual disabilities, where he has been admitted multiple times. Loftus has now been in group home number five for about three months, and after a rocky start, O’Grady reported that he is “settling in.”
When I asked O’Grady if she had ever considered Lakeside, where Andrew Parles lives, she told me the state had never presented it to her as an option. But when she described her ideal setting for Loftus, it sounded very familiar: “I’d want counselors and therapists available on-site, and lots of opportunities for exercise … Residents would have their own rooms, but live with like peers. And there would be decent security, for Tyler’s elopement issues.”
“The folks we struggle with the most are the ones with challenging behaviors,” Nancy Thaler, of NASDDDS, acknowledged. “So we say everyone can live in the community but we haven’t figured out how to do that really well for everybody yet.”
Isn’t this an argument for congregate settings like Lakeside or Safe Haven? Not necessarily, says Thaler. “Having people with challenging behaviors living together compounds the problem. It’s important to be responsive to these behaviors when they occur, and it’s hard to do that when you have a large group of people.”
Something rarely mentioned, as advocates and policy makers clash over the meaning of “home and community based,” is how few adults with I/DD will actually receive waivers. My state, Pennsylvania, just announced that this year it will award 200 additional waivers to a waiting list of more than 17,000 people. A February 2014 headline from The Connecticut Mirror sums it up: “For CT Adults With Developmental Disabilities, Housing Help Unlikely Until Parents Die.”Links to an external site.
Nancy Thaler explained the math to me. There’s “one big pool of money shared by the aging and the disabled,” she said. Both groups are growing, but the aging group is growing much faster: 10,000 baby boomers are entering Medicare and Social Security every day, while 500,000 autistic children will become adults over the next 10 years.
Facing these unsustainable numbers, states have increasingly pushed models that support individuals with I/DD in their family homes—or in the homes of other families. Euphemistically called “life sharing,” this latter program is really adult foster care, for which participants are paid approximately $25,000 a year.
“The provider agencies are having a hard time recruiting families—there are less than 1,600 families in Pennsylvania that do it,” said JCHAI’s Stacy Levitan. “My understanding is that more people were signing up when they thought it would be easy, just some extra income and a way to help people with disabilities, but then they found they often had to quit their jobs to stay home and care for their charges, who were not that independent.”
And there’s very little oversight to make sure hosts are planning activities for their charges or facilitating community involvement. Although many of these placements work out well, most of the parents of I/DD kids I know—myself included—are terrified at the prospect of their children languishing in a stranger’s basement watching YouTube all day. Or worse: In 2008, 28-year-old Tara O’Leary starved to deathLinks to an external site. in a New Jersey foster home.
You might think, given the rising numbers and shrinking resources, the states would welcome partnerships between the public and private sectors. There are many, all over the country, started by parents or providers who were able to use different funding streams—including private donations, tax credits, municipal grants, and low-income housing allocations. By the end of 2015, Madison House Autism Foundation is expecting to launch the Autism Housing Network, a website that will help those collaborating on similar projects find one another.
But if larger, disability-specific settings are prohibited, many of these programs will become unfeasible. The Bergen County United Way, for example, has built several intentional communities in New Jersey for individuals with a range of disabilities. It oversees every stage of these projects, funding all the initial assessments, designs, and plans with its own capital. The New Jersey Housing Mortgage Finance Agency offers special loans that allow the United Way to purchase land; other sources include local county-government community-development departments and the Federal Home Loan Bank. Private agencies provide direct care to residents.
I visited one of these projects—Airmount Woods—and was struck by the number of elements tailored to the needs of this population. The organizers had consulted well-known autism schools to create a therapeutically designed environment that would reduce sensory triggers such as light, noise, and vibration. The walls were built of tempered glass and heavy-duty wallboard, materials that could withstand violent meltdowns. Clear sightlines allowed staff to see almost the entire house from the kitchen.
“Now other municipalities are calling, looking for similar projects,” Toronto said. “Some of the most wealthy towns in New Jersey want to donate land or use their trust funds to build affordable, supported housing and suddenly DDD [the Division of Developmental Disabilities] has changed the name of the game, telling us that residents may not be able to use their waivers.” A pipeline of 350 units has now been effectively halted, as Toronto waits to see the final version of New Jersey’s regulations. “The Rockefeller Group wants to donate the land right across the street from Farleigh Dickinson University and next to the headquarters of the New York Jets. It’s close to public transportation, employment opportunities, shopping. They want us to build 40 units,” Toronto sighed. “But if the proposed changes go through we’ll only be able to build four.”
Prospects look brighter for The Arc Jacksonville, a provider in Florida that serves those with autism and I/DD. It’s months away from opening The Arc Village, a community that will include 97 one- and two-bedroom units for approximately 120 residents. Jim Whittaker, the president and CEO, told me how the project was funded. Florida provided many millions of dollars, including $10 million in low-income tax credits, which The Arc sold to an investor. “Plus, we put up $2.4 million in owner equity matching funds,” Whittaker said.
All this capital means The Arc Village will have no mortgage, resulting in low operating costs and rents as much as 70 percent below market value. Residents can use waivers if they have them, but the community was designed to be affordable for those paying out of pocket. Whittaker said inquiries have been pouring in from all over the country. “Some of them are coming from traditional supported living, where they live in apartments with some assistance, but they are so, so lonely. What they want is a welcoming community. The Village is the best of both worlds: Residents can work, play, and worship in Jacksonville, but come home and hang out with peers in a safe environment.”
It’s this level of community engagement that convinced Florida officials that this large project meets the intent of the CMS final rule. “The state has looked at CMS requirements, and they don’t mention numbers. What they’re looking for is integration, control, and choice, and we meet and exceed those standards—we’re off the chart on most. There isn’t a group home in the country that’s going to be less restrictive than our apartments,” Whittaker said. In fact, the state is considering providing special funding to move some of the 20,000 individuals on Florida’s waiver list into apartments in The Arc Village.
As part of the Lakeside program, Parles volunteers for Meals on Wheels and works in the campus greenhouse. (Neal Santos / The Atlantic)
Nancy Thaler accused me, in the nicest way, of being “overly optimistic about the potential for good in congregate settings and really naïve about the potential for evil.”
Perhaps. I was not a parent during the era of Willowbrook. But I’ve read enough contemporary news stories to know that similar abuses continue today. In 2012, for instance, The New York Times reportedLinks to an external site. on two lawsuits at large facilities for I/DD adults. At one, in Brooklyn, a resident left in the care of a teenager nearly choked to death. At another in Albany, The Times reported, “employees restricted a man to a small mat on the floor, intentionally starved him, and beat him with blue painted sticks they called magic wands.”
But it’s not clear to me why thriving communities like Misericordia, Safe Haven, Lakeside, and The Arc Village don’t play more of a role in this debate. “People really do deserve the care that best suits them,” said the University of Pennsylvania ethics professor Dominic Sisti. “I don’t see how that’s even debatable.” Sisti received national attention in January 2015 when he and two colleagues published a viewpoint in The Journal of the American Medical Association with the provocative title: “Improving Long-term Psychiatric Care: Bring Back the Asylum.”Links to an external site. I reached out to him because although his paper is about the care of patients with chronic psychiatric disorders, his description of individuals “who cannot live alone, cannot care for themselves, or are a danger to themselves and others” reminded me of my own son.
“We were trying to rehabilitate the term, bring it back to its original meaning, which is a place of sanctuary and healing,” Sisti said. “But it turned out to be too distracting. Everyone focused on that instead of the ethical imperative, which is clear: We need settings that match up with each individual’s needs.”
Which brings us back where we started: Who decides what’s best for those with developmental and intellectual disabilities?
Thaler argues that states that set size limits won’t really be taking options off the table. “There’s a difference between people being allowed to do something and compelling the government to fund it,” she told me. But this would imply that the full range of residential options should only be open to those who have $4 million in trust funds to pay for them. Besides, that market is so small it can hardly drive innovation in the field. As Tom Toronto of the United Way told New Jersey DDD officers following a public comment forum in February, “We can’t build on spec. We need to know residents will be able to use their waivers.”
Ne’eman made a different argument: He said that HCBS waivers were designed specifically for home and community-based settings, and pointed out that the government also offers institution-specific funding. “Nothing prevents ICF funding from being used to fund campus models,” he told me, referring to the Medicaid benefit many Misericordia residents use. However, just a few minutes later, he acknowledged that several states had eliminated ICFs altogether. Even states that still have ICFs spend the bulk of their Medicaid dollars on HCBS waivers because they offer much greater flexibility: Rather than attaching to beds in particular facilities, as ICF funding does, the waivers attach to individuals, allowing recipients to change residences or providers and take their money with them.
It may be another form of discrimination to suppose that intellectually disabled adults can’t thrive in a community of their own making.
What’s more, Ne’eman’s organization was one of the three self-advocacy groups that coauthored the policy paper “Keeping the Promise: Self Advocates Defining the Meaning of Community Living” in 2011, and that paper makes no mention of ICFs. Instead, it emphasizes that people with autism-spectrum disorders “should live in apartments, houses, condominiums, trailers, etc. located in rural, urban, or suburban communities with typical public resources such as shops, houses of worship, places to work, and accessible transportation systems.” The paper makes it clear that no larger accommodation of any kind meets its standards. “Gated communities, farmsteads, and clusters of group homes—even those that include both people with and without disabilities—are not in the community. When we live in those settings we become segregated from the general scope of community life.”
Ne’eman said he and his colleagues didn’t base their opposition primarily on horror stories from the past. “We drew from a growing body of research literature on integration,” he told me. “Research shows that choice and control increase when setting sizes are smaller.”
Ne’eman sent me a studyLinks to an external site. comparing the degree of choice individuals have in HCBS programs versus ICF-supported facilities. That study did show that HCBS waiver recipients, on average, had more control over their lives. But the HCBS recipients were also, overall, significantly higher functioning than the ICF residents. The study authors were careful to point out that people who had higher levels of intellectual impairment, self-injury, and disruptive behavior had much less choice, even when they lived in smaller residences. The data source for the study— the National Core Indicators Consumer Survey—focused on personal decisions like when to get up, when to eat, and what to buy. It’s hard to prioritize questions like these when an individual might blind himself, attack staff, or compulsively eat inedible, possibly toxic, substances (a behavior known as pica). Nancy Thaler acknowledged that some of the core indicators in the survey represent “luxurious outcomes” that can only be considered once health and safety needs are addressed.
It may be true that those in smaller, integrated settings do have more control over every aspect of their everyday lives. But for those who believe in expanding residential options, this seems like one element of a cost-benefit analysis—not a reason to rule out congregate settings altogether. For some individuals with I/DD and their families, scheduled, communal meals might make more sense than eating alone with an aide in a private apartment. These are matters of personal preference; neither is a bad choice.
The larger problem is the limited way “community” is being defined as exclusively the neurotypical community by CMS, the states, and, most surprisingly, by self-advocates such as Ne’eman. We are all part of many communities, and the government is generally not in the business of legitimizing some over others. The push for fully integrated housing comes from a desire to avoid discrimination. But it may be another form of discrimination to suppose that I/DD adults can’t thrive in a community of their own making.
Vicky Blum is an autistic woman who bought the first house in what is projected to be a large intentional community for people with autism and their families in Pueblo, Colorado. She feels that immersion in the neurotypical community has left many young people with “the feeling of hopelessness, of being ‘less than,’” as she wrote to me, leading to increased rates of unemployment, homelessnessLinks to an external site. , and suicideLinks to an external site.. She said the Pueblo community would be a place where residents don’t have to “fake being neurotypical,” but can “embrace their awesome and authentic Autistic selves.” (Throughout her email, Blum capitalized “Autism” to underscore that sense of community.) She’s excited about watching children grow up “surrounded with incredible Autistic role models and mentors.” She also looks forward to hosting activities “that will teach non-Autistics who we are, which will make acceptance much easier.”
Blum’s community sounds lovely, but it would never be an appropriate home for Jonah, who will always need much more structure and supervision. That’s why it makes sense for waivers to support a range of settings that’s as broad as the range of challenges faced by this population: single apartments or small group homes for some, farmsteads or intentional communities for others. I had a tough time explaining this issue to Jacob during my dinner at the JCHAI house—frankly, he preferred to talk about the Paddington movie he couldn’t wait to see. But when it came to the question of where he himself should live, he did have one strong opinion: “I think I should get to decide.” Amy S.F. LutzLinks to an external site. , a Philadelphia-based writer, is the cofounder and president of the EASI Foundation Links to an external site. and the author of the book Each Day I Like It Better: Autism, ECT and the Treatment of Our Most Impaired Children Links to an external site. .
4. Parsons, M. B., Bentley, E., Solari, T., & Reid, D. H. (2016). Familiarizing new staff for working with adults with severe disabilities: A case for Relationship building. Behavior Analysis in Practice, 9, 211-222.
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5. The Cognitive Distortions that Feed Neurodiversity Radicalism
“ I slammed my laptop shut and decided that my neurodiversity days were over. If your version of justice involves cyberbullying and slander, count me out.”
By Lucy Kross Wallace
A year ago I was en route to becoming the type of “neurodiversity activist” who cyberbullies autism parents in the name of tolerance.
I had every hallmark of such an activist: a recent ASD diagnosis, a desire to partake in the social justice that surrounded me, irrational self-confidence, ignorance of the more severe end of the autism spectrum, and a Tumblr account.
Clearly, if I’m writing this blog post, a lot has changed since then. While I don’t wish to excuse my former self or the behavior of anyone who harasses parents or trivializes autism, I do want to elucidate a series of cognitive distortions that accelerate radicalization. Eventually, these distortions can motivate extreme behavior, including harassing autism parents online, calling them “MaRtYr MoMmIeS,” and accusing them of wanting to murder their children. Disturbing as these actions are, my experience as a former ideologue shows that there’s a way out of this rabbit hole.
Autism as an Identity
The path toward neurodiversity radicalism begins with the adoption of autism as an identity and the perception that being autistic grants a person authority on all autism-related matters. My slide into this mindset started innocently enough. After years of mental illness and unsuccessful treatment, I finally had a diagnosis that explained my impairments and idiosyncrasies, enabling my doctors to help me transition from psych ward patient to college student. Reading about autism online gave me a vocabulary to describe my experiences and reassurance that I was “different, not less.”
But of course, in classic Asperger’s fashion, I took this useful framework to an unhealthy extreme. “Autism is a part of who I am” became “autism is a critical part of who I am,” which then became “autism is who I am.” I was inspired in particular by the Autistic Self Advocacy Network, whose slogan – “nothing about us without us” – invoked a sense of urgency, suggesting that any failure to insert oneself aggressively into conversations about autism constituted a betrayal of the cause. The motto “autistic people are the real autism experts” appealed to me for the same reason. It offered automatic street cred that I could use however I wanted. Who wouldn’t want to be more knowledgeable than a doctor or parents pouring themselves into care for autistic children simply by virtue of having a certain diagnosis?
Identitarianism Fosters a False Equivalence
Next, due to the concept-creep associated with the word “autism” and the collapse of multiple diagnoses into one autism spectrum category, we suffer an illusion that different people with “autism” have more in common than they actually do. In my dark days of advocacy, I fought fiercely against the notion that my autism was any less severe than anyone else’s, drawing on bizarre, nonsensical analogies I’d found online that equated autism to cupcake flavorsLinks to an external site. and insisted that a single person can be both high- and low-functioningLinks to an external site. . Of course, these arguments were ridiculous, but admitting that my autism was relatively mild would have forced me to surrender my sense of authority.
Normalization of dysfunction
The radicalization is accelerated by advocates’ stringent adherence to the neurodiversity tenet that autism is “natural” and “normal.” This argument constitutes a logical fallacyLinks to an external site. and immediately crumples upon close examination, as autism is no more natural than earthquakes, syphilis, wildfires, or dementia. Moreover, the research literature strongly suggests that autism has abnormal physiological roots beginning early in brain development.
The “natural” argument is much easier to make for those with milder autism, where it may indeed be the case that stigma overshadows intrinsic impairments. For instance, there is substantial evidence to suggest that when high-functioning autistic girls “camouflage” and attempt to fit in with their peers, they run the riskLinks to an external site. of developing mental illness. This predicament highlights the importance of acceptance, rather than attempting to “fix” autism, for some people on the spectrum. It would be erroneous to overgeneralize this conclusion, but this is precisely what neurodiversity advocates do.
The fallacy of mutual exclusion
While there may be no one exemplar for neurological health, some people are clearly impaired. We can respect and love people with disabilities while hoping to remedy their impairments whenever possible. And we can fight discrimination without downplaying the value of prevention and medical intervention. Both concepts can and should exist simultaneously; they are not mutually exclusive.
Negative filtering
On Tumblr, my fellow activists and I complained endlessly about instances of “ableism,” neglecting the enormous strides our society has made in accessibility and inclusion over recent decades. Negative filtering is also evident when neurodiversity advocates scorn “autism warrior parents” whose experiences are dismissed the moment they question neurodiversity doctrine.
There is also routine discounting of the positives (e.g., the parent’s love for their child), and routine catastrophizing, for example, claiming that a negative comment about autism will somehow result in a parent (no matter how devoted and loving) wishing to abuse or even murder their child. When the activist goes on to harass the parent, she genuinely believes that she is speaking out against an enormous injustice and that “silence is compliance.”
Black-and-white thinking
Neurodiversity devotees tend to favor dichotomous thinking over nuance. On multiple occasions, I began reading articles on autism, only to shudder the moment I noticed a phrase like “affected by autism” or “living with autism.” I had internalized the neurodiversity preoccupation with language so thoroughly that these innocent words were enough to make me discard an entire article, deciding that its contents were irredeemably bigoted. These rigid judgments fed into my belief that the world was composed of good people and ableists, matching the “you’re either with us or against us” attitude that characterizes the neurodiversity movement.
Personalization
I immediately connected conversations about autism to my own experience, never missing a chance to pipe in with my (often uninformed) opinion. This distortion plays a significant role in the harassment of autism parents: thanks to the neurodiversity movement’s obsession with language, a parent’s use of perfectly reasonable terms like “suffering from autism” or “severely autistic” are taken as personal insults, met with a self-referential chorus of “what about me?” Advocates concern themselves only with their own identities and needs, rejecting realities of severe autism that could sully their preferred portrait of the disorder. In other words, they see themselves as victims of phrases that were never meant to apply to them.
Out the Other Side
Ultimately, I was driven away from neurodiversity not by its positions but by its attitude/actions toward detractors. As I explored various criticisms of neurodiversity, I was struck by advocates’ refusal to acknowledge these concerns and by the vitriol hurled at critics.
The turning point came when I read two scathing responses to Jonathan Mitchell’s eminently reasonable criticismLinks to an external site. of the neurodiversity movement. The author of the first response mocks Mitchell’s struggles to navigate dating (“Perhaps if he’d stop making sexist remarks and would stop talking…about smearing feces, he’d have better luck with women”) and intimates that Mitchell is responsible for his own unhappiness (“He is focused on something that will never happen [i.e., an autism cure]”). The second response, by a writer using the ironic pseudonym “Humble Aspie,” begins with a clumsily photoshopped parody of a 1936 Nazi propagandaLinks to an external site. poster. Aspire to being a pure bred aryan [sic] winner? the caption reads. Join Self Loathing Autistic People #autisticdarkweb. Needless to say, this appalling attempt at satire trivializes the atrocities of the Holocaust and confirms Mitchell’s observation that neurodiversity proponents “are frequently less than cordial to those who disagree with them” – to put it mildly.
I didn’t end up reading the rest of “Humble Aspie’s” article. Instead, I slammed my laptop shut and decided that my neurodiversity days were over. If your version of justice involves cyberbullying and slander, count me out.
The Way Forward
While certain advocates have demonstrated cruel and egregious animosity toward neurodiversity dissidents, I suspect that most #ActuallyAutistic internet users would never be so vicious toward victims in real life. Social media distances us from one another, allowing us to see others as avatars for ideology rather than human beings. Much of the support for the hatred of “autism warrior parents” is tacit: casually liking a Tumblr post or a tweet, reblogging the occasional sarcastic meme, passively buying into stereotyped depictions of “curebie moms.” These decisions’ apparent smallness belies their cumulative effect, making it easy for internet users to worsen the problem of bullying without grasping the consequences of their actions.
Meanwhile, those who genuinely oppose the neurodiversity doctrine may be reluctant to speak out for fear of being harassed and abused. There is no alternative to neurodiversity that offers the same instant friends, prepackaged identity, expert branding, trending hashtags, catchy slogans, appealing merchandise, and support from popular media outlets. This renders opposition to the movement virtually invisible, discouraging open criticism.
I see three crucial components of working toward change. First, we need condemnation of this bullying on a much broader scale. Leading advocacy organizations and responsible clinicians, providers, and researchers must take a firmer stance against anti-parent bullying. Explicitly stating that harassment is unacceptable should be a no-brainer.
Second, activists should engage in self-reflection and demonstrate the same awareness that they demand from others. My propensity for rigid thinking and hyperfixation contributed to my neurodiversity obsession. Once I recognized this and challenged my rigid thought patterns, I developed a much more balanced mindset, gained empathy for families and individuals affected by severe autism, and stopped wasting time on pointless quarrels about language.
Finally, I think that much of neurodiversity radicalism lies in fear – fear of stigma, fear of discrimination, and fear of being overlooked. I didn’t get the help I needed for years because doctors assumed that because my autism was mild, I should be able to manage on my own. It wasn’t until I became severely ill that anyone paid serious attention to my diagnosis. But as the National Council on Severe Autism has stated in its FAQs, the reality of low-functioning autism doesn’t mean that high-functioning autistics don’t deserve support or don’t have a real disability. This is not a competition, and when we treat it like one, everybody loses.
Lucy Kross Wallace is an undergraduate student at Stanford University.
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