Our Live / Work / Play Communities Will Provide Adults with Autism a Continuum of Residential, Employment and Social-Recreational Options in a Mixed-Use, Disability-Specific Campus Setting, and be Financially Self-Sustainable.
One of the most fundamental beliefs of LTO Ventures is that adults with Autism Spectrum Disorder (ASD) have the right to choose where and how they want to live. Our mission is to provide them with a compelling setting to consider making their home. We believe these individuals, in consultation with their parents, caregivers and support team, can and should decide for themselves what is a “home and community-based” setting. We do not believe it is the role of the government, or its disability rights advocacy network, or any self-proclaimed advocates, to decide that for them.
LTO Ventures communities are not intended for every adult with ASD, but we hope our communities will be ideal settings for many (see “Target Market”). We will be one innovative option among a spectrum of residential lifestyle options including scattered-site independent living apartments and homes, home clusters, farmsteads and ranches, urban multi-tenant developments, and mixed-use disability-specific campuses.
The LTO Ventures community model combines a continuum of “person-centered” residential, employment and social-recreational options suited to the needs and desires of each individual within a master-planned, community-based, Olmstead-compatible campus (see “Olmstead Compatibility”).
Our model combines the best design, financial and operational elements of gated residential and master-planned communities, senior living residences, college campuses, and mixed-use live-work environments. The design is enhanced by best practices developed from research into supportive and sustainable residential options for adults with ASD.
The most dramatic and innovative aspect of the LTO Ventures model will be financial. It will not require federal or state government funding and the restrictions that accompany it. Each community will be self-originating and self-sustaining through private pay, donations, grants, special needs trusts, philanthropic equity funding, partnerships with entrepreneurial for-profit and non-profit businesses, investments, endowments, tax abatement and recovery districting, institutional lender financing, and volunteers.
Each community will be organized to provide as much independence and self-determination for, and self-governance by, its residents as possible. LTO Ventures communities will meet the physical, emotional, recreational, social, religious and spiritual, and/or similar needs of its residents aged 18 through end of life.
Communities will be vehicle-free, access-managed campuses that offer a high degree of integration with the non-disabled community while providing ingress/egress control to guard against wandering or elopement and ensure the safety and security of residents. Communities will be located near population centers that can provide an ample paid and volunteer staffing pool, transportation, retail businesses and professional services.
Communities will be located near universities with autism programs, autism centers of excellence, and/or exceptionality programs. These will provide a source of volunteers, interns, staff training, services, research, and support across all areas of our communities.
Reality vs Utopia
The inspiration for LTO Ventures and its community model is my teenage daughter who has autism and is nonverbal. She has exceptional physical strength and gross motor skills and improving fine motor skills. She is blessed with a playful social nature and enjoys the company of all children and adults, disabled and typical. She also exhibits a desire to be able to exercise degrees of independence at her choosing.
It is unlikely she ever will be able to live independently, however. She cannot cross a street by herself because she doesn’t understand the danger of stepping in front of a moving vehicle. She cannot safely walk unaccompanied in many residential or commercial settings because she doesn’t understand that there are predators and bullies targeting girls just like her for abuse and exploitation.
There are daily living skills she does well, and others (e.g. bathing, feminine hygiene, house cleaning, laundry, shopping) that are a challenge. She also has no concept that her father won’t live forever to take care of her. In coming to terms with my own mortality and in thinking about what an ideal setting would be for her, the LTO Ventures community model was created.
It’s a ludicrous notion to expect her neighbors in a typical setting to be her “it takes a village” safety net. She can feed herself, but she cannot use a stove or microwave to prepare a hot meal. A setting where she could go to eat or pickup meals of her choosing would be ideal.
She can work. With supervision she can do fine motor projects and follow multi-step instructions. But she cannot speak, read or write, therefore she will never be able to pursue competitive employment on the open market. That doesn’t mean she can’t earn a minimum or higher wage at a job of her choosing matched to her abilities and desires.
It took only a little research and conversations with parents of other children and young adults with ASD to realize that there are lots of parents looking for the same kind of setting. There exist some very well-designed and operated residential settings, but the huge demand coming in the next 10-15 years cannot be fulfilled by current models alone.
The United States is on the verge of a housing crisis as more than 800,000 children identified with ASD enter adulthood, including an estimated 500,000 by 2020. Residential, employment and social services and settings already lag demand so severely that this new generation of special needs Americans threatens to overwhelm public and private resources. The problem is worsening as the prevalence of ASD has reached 1 in 88 children and is “a continuing urgent public health concern” according to the U.S. Centers for Disease Control and Prevention.
As of 2010, an estimated 115,089 Medicaid-eligible intellectually and developmentally-disabled persons are on waiting lists for residential services. This is an increase of more than 60% over the 71,922 people on the same waiting lists in 2000, the first year after the Supreme Court Olmstead decision.
Nationally, more than 700,000 people with intellectual or developmental disabilities are living with caregivers who are 60 years of age or older.
Residential settings provided by state and non-state agencies have grown significantly in the last 30 years, but not fast enough to meet the demand of the last 10 years, much less the next 20 years.
It is estimated that 70-85 percent of adults with ASD live with their parents or a family member until they can no longer support them, and 58 percent of family caregivers are between ages 51 and 79. Once a family can no longer provide necessary supports, a common recourse for these adults is emergency placement in nursing homes, group homes, or supported/assisted living arrangements.
Tragically, even in situations where funding is available and providers want to add capacity, group homes and other scattered-site settings are met with NIMBY (“not in my backyard”) resistance from neighbors who argue against them in planning hearings and complain to police and other authorities about noise and transportation.
Unemployment among ASD adults exceeds 90 percent and the average salary for employed adults averages $4,824 annually. Most jobs are low-skill/low-pay positions, and may be part of programs paying sub-minimum wage (e.g. FLSA 14c). Many ASD adults want to work full- or part- time and can hold jobs given proper supports, but state vocational rehabilitation programs are underfunded and overwhelmed.
Quality of life is a huge concern and too often is overshadowed by essential living needs. Social-recreational opportunities are severely limited by transportation, program availability, staff availability, hours of operation, and funding.
Overlooked is the unintended isolation and segregation that exists today for tens of thousands of ASD adults who are trapped in their parents’ homes with nothing to do because of a lack of housing, employment and social-recreational choices, and the funds to pay for them.
Medicaid Safety Net Failing
Medicaid is the primary funding safety net for hundreds of thousands of persons with disabilities. To be clear, under the HCBS waiver Medicaid pays only for services, not room and board. However, Medicaid requires those services be provided in a Medicaid-approved setting.
The federal program does not provide 100 percent of the funding. States typically bear a matching load for room, board and specialized services, and may adjust placement rates based on available funds. Even in boom economic years, states have not had enough funding to meet the demand and the result is extensive waiting lists, low staff pay and turnover greater than 50% annually (almost 100% in Nevada).
The average wage for direct service staff in a group home is $8.50-9.50 an hour. Put another way, the trained and licensed staff providing daily life care for adults with ASD get paid about the same as a high school graduate working as a barista in Starbucks.
It may get even worse. Since 2009, the Centers for Medicare & Medicaid Services (CMS) has been trying to change the regulations to more narrowly define what constitutes a “home and community-based” setting where waiver participants may receive services. At stake is nothing less than the future of essential residential and supportive services for hundreds of thousands of adults with ASD as well as adults with intellectual and developmental disabilities. (see “Choice v. Olmstead” http://wp.me/P1ZYZ5-1D)
If CMS is successful at narrowing the type of setting it considers “home and community-based” (i.e. “eligible”), fewer settings will be eligible as places to receive Medicaid-paid services, and existing Medicaid clients will be forced to seek new settings or lose services. It is estimated that more than 25 percent of existing eligible residential settings would no longer meet the proposed new CMS criteria, and would force tens of thousands of disabled individuals out of their residences.
The LTO Ventures target market generally is not adults with High-Functioning Autism or Asperger’s who can live independently or in supported living arrangements in individual or shared apartments or homes. Nor is our market the adults who require intensive medical and/or behavioral supports. There are well-established and excellent providers already serving these populations, although there need to be many more of their settings to meet the tremendous demand.
The LTO Ventures community model was developed to serve the adult ASD population in between. (see “Autism’s ‘Fly-Over’ Population” http://wp.me/p1ZYZ5-3K) Residents who choose to live in our community will be at least 18 years of age, can communicate effectively verbally or non-verbally, are ambulatory or otherwise mobile via wheelchair or assistive device, and are nonviolent to others.
LTO Ventures communities will be designed to support aging-in-place so that residents who become elderly can choose to remain in their same settings for their entire lives. Onsite facilities and staff will enable the communities to serve the needs of residents who may develop temporary or permanent healthcare issues.
Each of our communities will be designed for approximately 100 individuals. Potential residents, first and foremost, are expected to contact and apply to live in an LTO Ventures community because they are making their own independent choice of the setting in which they want to live and the life they want to lead.
LTO Ventures will utilize its own custom-developed, evidence-based intake process conducted by experienced professionals to determine the eligibility and suitability of each candidate to each of its residential communities. Residents will be matched to a domicile based on their desired setting, living skills, medical needs, and financial resources.
Residents will have the opportunity, and be encouraged, to transition to more independent settings within our community or to become self-sufficient enough to move out of our setting into a supported or independent setting in the surrounding community.
The size of each LTO Ventures campus is estimated between 20 and 30 acres and will be planned and operated around three basic aspects:
Housing options will include individual and shared apartments for residents able to enjoy relatively independent living. Units will be organized in clusters to encourage interaction among residents and to create “neighborhoods” that take on the personalities and character of the persons residing there. Each unit will be adapted and equipped to the specific needs and desires of each resident, and will incorporate state-of-the-art concepts for adults with ASD.
These concepts are derived from our own extensive research into successful settings, and guided by two landmark multi-year studies — Opening Doors: A Discussion of Residential Options for Adults Living With Autism and Related Disorders, a collaborative report published in 2009 by the Urban Land Institute, Southwest Autism Research & Resource Center, and Arizona State University; and, Advancing Full Spectrum Housing: Designing for Adults with Autism Spectrum Disorders researched and written by Arizona State University.
Individuals who choose to benefit from greater access to and support from community staff can opt to live in our higher-density multi-unit buildings. These structures will be very similar to senior residential settings commonly in existence today. Access to these units will be through interior hallways linked directly to the community’s central social and recreational facilities.
Each resident will be expected to pay rent as a market-standard percentage of 30 percent (or less) of his or her gross income (as defined by the 2006 American Community Survey and 1981 amendment to the 1968 Housing and Urban Development Act), plus utilities as individually incurred, and a common area maintenance fee (which may be reduced or waived if the resident assists in the care and upkeep of the community grounds).
LTO Ventures communities are not intended to be “low-income housing” developments as defined by the U.S. Department of Housing and Urban Development and the Internal Revenue Code. We do expect a portion, possibly a significant portion, of the residents of each LTO Ventures community to have incomes that fall close to or below levels described in Revenue Procedure 96-32, 1996-1, C.B. 717. In the Procedure, “low income” is defined as 80 percent of the area’s median income, and “very low income” as 50 percent of the area’s median income.
Residents will choose their direct care staff by contracting with the provider of their choice independently, by working with our staff to identify and contract with an outside provider, or by utilizing LTO Ventures staff.
One of the most important aspects of the LTO Ventures community model is the guaranteed employment we will provide through businesses that will be located on the campus. A variety of different businesses will provide job options for every resident, and every job will pay minimum wage or better. Residents also will be free to choose employment off-campus.
Buildings integrated into the campus will house for-profit and non-profit businesses in partnership with existing employers as well as created by resident and outside entrepreneurs.
The revenues and profits of these businesses will contribute to the income of the community, offsetting some or most of the costs of operating the campus and provision of services to residents. Wages paid to residents will enable them to pay rent, purchase food and services and have discretionary income.
By partnering with entrepreneurs and existing local and national companies, the on-campus businesses will team up typical individuals side-by-side with residents to create and grow real companies, build goodwill, and showcase the potential of adults with autism.
The social and recreational aspects of everyday life will be an important part of the quality of living in an LTO Ventures community. Some of the greatest hindrances to persons with autism enjoying full and meaningful social lives are the availability and hours of venues and programs, the availability of transportation, and finding gathering places and activities that persons with autism desire.
Our residents will tell us what they want and we will collaborate with them to facilitate those choices.
The social-recreational options on our campus are expected to include therapy and exercise rooms, swimming/wading pool, gym, TV and movie room, music and art rooms, café, bowling, and a meeting facility. Residents also will be free and encouraged to pursue social and recreational activities off-campus.
The surrounding community will be invited to participate in on-campus events, spend time with residents, and utilize some of the venues and services for their own activities and programs.
We believe that the LTO Ventures community model fulfills the full intent of the 1999 landmark U.S. Supreme Court ruling in Olmstead v. L.C. [527 U.S. 581] which held that unnecessary segregation and institutionalization of persons with disabilities is a form of discrimination and prohibited under the Americans with Disabilities Act.
The decision was a giant step forward to advance choices in housing and services for millions of people with disabilities. In the Court’s opinion Justice Ruth Bader Ginsburg wrote: “we recognize…the States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental abilities, and the States’ obligation to administer services with an even hand.”
In its opinion, the Supreme Court used the terms “home” seven times and “community” 80 times, but never defined those terms. The Supreme Court did not define these terms because it intended individuals to be served by these benefits decide that for themselves.
Many individuals with ASD, for example, prefer to live, work and socialize with and around other individuals with ASD because they feel more comfortable and accepted. Of course, many individuals with ASD or other developmental disabilities prefer to live, work and socialize with and around non-disabled individuals. “Community” is what each individual decides for himself or herself.
“Choice” advocates consistently argue an all-inclusive position that the consumers of these services and their families and care team should be the ones to decide, or considered more broadly, to let the market decide.
President Obama, in a June 22, 2009 White House press release commemorating the 10th anniversary of the landmark Supreme Court decision said: “The Olmstead ruling was a critical step forward for our nation, articulating one of the most fundamental rights of Americans with disabilities: Having the choice to live independently.”
LTO Ventures communities will be located in geographic areas of the U.S. where the adults served and their families want to live, where local and state governments provide a supportive regulatory environment, and in proximity to universities with autism or exceptionality programs.