California's Autism Crisis
Over the past several years we at SFAS have had the honor and opportunity to speak with dozens of leaders in the local developmental disability community, including Regional Center directors, day program providers, ASD education leaders, special needs housing providers, support services providers, Area Board staff, parent advocates, case workers, real estate developers, and others regarding the future of adults with autism in our state.
A clear and disturbing picture has emerged from these discussions. We are facing unprecedented, staggering demand for adult autism housing and support services, but have no roadmap, as yet, to address the needs, especially for those with substantial disabilities and behaviors. We have found broad agreement about the following points:
[Editor's note: the following discussion reflects 2013 numbers.]
• Autism rates have skyrocketed over the past 25 years. In 1989, California's Department of Developmental Services counted 3,262 consumers with substantial autism. Today, there are 68,631. People who have worked with the developmentally disabled (DD), including in the institutions, agree this is not due to better ascertainment or greater awareness, but rather to an actual increase in the numbers of persons with substantially disabling abnormal neurodevelopment that manifests, at least in part, in significantly impaired communication, social functioning, and repetitive behaviors. In our state, the rate of substantially disabling autism (a number that does not include those with milder forms) has soared 2,100% during this period. That means that where there was one person with autism in 1989 there are now 21. (Source: DDS.)
We have nearly 10,000 individuals with substantially disabling ASD served by local Regional Centers (RCEB, San Andreas, and Golden Gate), not including those with multiple diagnoses, including:
A clear and disturbing picture has emerged from these discussions. We are facing unprecedented, staggering demand for adult autism housing and support services, but have no roadmap, as yet, to address the needs, especially for those with substantial disabilities and behaviors. We have found broad agreement about the following points:
[Editor's note: the following discussion reflects 2013 numbers.]
• Autism rates have skyrocketed over the past 25 years. In 1989, California's Department of Developmental Services counted 3,262 consumers with substantial autism. Today, there are 68,631. People who have worked with the developmentally disabled (DD), including in the institutions, agree this is not due to better ascertainment or greater awareness, but rather to an actual increase in the numbers of persons with substantially disabling abnormal neurodevelopment that manifests, at least in part, in significantly impaired communication, social functioning, and repetitive behaviors. In our state, the rate of substantially disabling autism (a number that does not include those with milder forms) has soared 2,100% during this period. That means that where there was one person with autism in 1989 there are now 21. (Source: DDS.)
We have nearly 10,000 individuals with substantially disabling ASD served by local Regional Centers (RCEB, San Andreas, and Golden Gate), not including those with multiple diagnoses, including:
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Each year in the Bay Area, hundreds of people with substantially disabling ASD "age out" of the school system, and need to locate new day or supported employment programs. (Source: DDS) However, such programs already have limited capacity and waiting lists. For the most part, these individuals lack access to housing vouchers and are presented with few options for community-based housing. Furthermore, adults with ASD are also usually too impoverished to income-qualify for the few low-income set-aside units that may become available from time to time.
Statewide there are nearly 80,000 individuals 21 and under with ASD, total, including those not served by Regional Centers. (Source: SELPAs and DDS) So far, the state has created no plans for serving this massive dependent or semi-dependent population as they become adults.
• Adult autism support entails costs far outstripping most parents' financial resources. For example, the annual costs associated with one person with substantially disabling autism living with an aide in a Peninsula community apartment, and attending an adult day program are as follows: rent and utilities $30,000; day program with 1:1 support $60,000; SLS services (two weekday full-time shifts, plus weekend shift) $120,000; food, clothing, recreation, and expenses of daily living, including communication and other adaptive devices $15,000. This is a very conservative estimate but adds up to $225,000 annually, not including medical care, transportation, workers' comp, training, vacation pay, overtime pay, substitute aides, or health care premiums for careworkers.
Assuming only one-quarter of the 67,000 individuals with substantially disabling ASD live in the community in this fashion, the annual costs amount to $3.8 billion. If we include all with substantial ASD, the costs will be $15 billion per year, which would represent a full ten percent of the state's total budget, and this does not include costs for those with mild autism or other developmental disabilities.
Group homes generally cost between $60,000 and $90,000 per substantially disabled ASD resident per year. Combined with other expenses such as day programs, the budget to care for an adult with substantial ASD living in a group home may be $160,000.
• Autism housing is seen as something of a mysterious new animal. Autism community leaders are keenly interested in finding ways to house adults with autism in the community, but admit that unlike many other forms of DD, autism often requires additional layers of protections, supervision, outdoor space, durable materials, and amenities not generally included in current forms of community-based housing. (See our summary of the unique challenges involved with serving ASD adults.) Even the best-intentioned service providers are somewhat mystified about how to best create nurturing, safe, sustainable housing models for ASD adults.
• Support services for this rapidly growing population are vastly underfunded. Many adults with autism require 24/7 supervision and care due to inability to care for themselves, communicate, or follow directions, or owing to behaviors that can cause harm to themselves, others, or property. They also require trained, skilled, compassionate and physically energetic and resilient staff. These services are underfunded, making it difficult to launch viable new day programs and supported living agencies. In addition, day programs are generally unaccustomed to serving adults with ASD, as their historic DD clients did not have autism (by any name).
• Abuse prevention is a key concern. Adults with substantial autism can be extremely vulnerable to physical, emotional, and sexual abuse, because behaviors can test the patience of caregivers, many with ASD lack any means to defend themselves, and those with substantial ASD are usually incapable of reporting abuse. Leaders are uniformly concerned that abuse of ASD adults is prevented, but the system currently provides minimal training and supervision.
• We lack a system to ensure ongoing care of ASD adults once parents have passed. Autism parents are aging, and none are immortal. Adults with ASD tend to have normal lifespans and will need skilled care for decades to come. The current system is premised on the idea that a family caregiver will be available to supervise the daily wellbeing of the DD adult. However, in most cases the ASD adult with outlive the parents and we have no system in place to replace the detailed, daily supervision provided by parents. Caseworkers at Regional Centers have heavy caseloads and can only provide spot checks a few times a year.
• The system is overly Byzantine and complex. There is broad agreement that the current system is fragmented, heavily bureaucratic and difficult to navigate even by the most competent and informed caregivers.
• General sense of “now is the time.” Leaders agree that the Department of Developmental Services and the legislature have known for some time of the inevitability of adult autism services crisis, but the year-to-year budget mentality and lack of long-range planning has meant we are left without any consensus about how to move forward. Now is the time to plan for our children's safe, fulfilling and healthy futures.
Statewide there are nearly 80,000 individuals 21 and under with ASD, total, including those not served by Regional Centers. (Source: SELPAs and DDS) So far, the state has created no plans for serving this massive dependent or semi-dependent population as they become adults.
• Adult autism support entails costs far outstripping most parents' financial resources. For example, the annual costs associated with one person with substantially disabling autism living with an aide in a Peninsula community apartment, and attending an adult day program are as follows: rent and utilities $30,000; day program with 1:1 support $60,000; SLS services (two weekday full-time shifts, plus weekend shift) $120,000; food, clothing, recreation, and expenses of daily living, including communication and other adaptive devices $15,000. This is a very conservative estimate but adds up to $225,000 annually, not including medical care, transportation, workers' comp, training, vacation pay, overtime pay, substitute aides, or health care premiums for careworkers.
Assuming only one-quarter of the 67,000 individuals with substantially disabling ASD live in the community in this fashion, the annual costs amount to $3.8 billion. If we include all with substantial ASD, the costs will be $15 billion per year, which would represent a full ten percent of the state's total budget, and this does not include costs for those with mild autism or other developmental disabilities.
Group homes generally cost between $60,000 and $90,000 per substantially disabled ASD resident per year. Combined with other expenses such as day programs, the budget to care for an adult with substantial ASD living in a group home may be $160,000.
• Autism housing is seen as something of a mysterious new animal. Autism community leaders are keenly interested in finding ways to house adults with autism in the community, but admit that unlike many other forms of DD, autism often requires additional layers of protections, supervision, outdoor space, durable materials, and amenities not generally included in current forms of community-based housing. (See our summary of the unique challenges involved with serving ASD adults.) Even the best-intentioned service providers are somewhat mystified about how to best create nurturing, safe, sustainable housing models for ASD adults.
• Support services for this rapidly growing population are vastly underfunded. Many adults with autism require 24/7 supervision and care due to inability to care for themselves, communicate, or follow directions, or owing to behaviors that can cause harm to themselves, others, or property. They also require trained, skilled, compassionate and physically energetic and resilient staff. These services are underfunded, making it difficult to launch viable new day programs and supported living agencies. In addition, day programs are generally unaccustomed to serving adults with ASD, as their historic DD clients did not have autism (by any name).
• Abuse prevention is a key concern. Adults with substantial autism can be extremely vulnerable to physical, emotional, and sexual abuse, because behaviors can test the patience of caregivers, many with ASD lack any means to defend themselves, and those with substantial ASD are usually incapable of reporting abuse. Leaders are uniformly concerned that abuse of ASD adults is prevented, but the system currently provides minimal training and supervision.
• We lack a system to ensure ongoing care of ASD adults once parents have passed. Autism parents are aging, and none are immortal. Adults with ASD tend to have normal lifespans and will need skilled care for decades to come. The current system is premised on the idea that a family caregiver will be available to supervise the daily wellbeing of the DD adult. However, in most cases the ASD adult with outlive the parents and we have no system in place to replace the detailed, daily supervision provided by parents. Caseworkers at Regional Centers have heavy caseloads and can only provide spot checks a few times a year.
• The system is overly Byzantine and complex. There is broad agreement that the current system is fragmented, heavily bureaucratic and difficult to navigate even by the most competent and informed caregivers.
• General sense of “now is the time.” Leaders agree that the Department of Developmental Services and the legislature have known for some time of the inevitability of adult autism services crisis, but the year-to-year budget mentality and lack of long-range planning has meant we are left without any consensus about how to move forward. Now is the time to plan for our children's safe, fulfilling and healthy futures.
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The SFAS is committed to improving the quantity and quality of lifespan care options in our communities. Our Adult Housing and Lifespan Care Solutions Initiative brings together parents, professionals, and policymakers in workshops, panels, and discussion groups to catalyze the process.
We are facing an unprecedented problems that demand unprecedented solutions and courageous leadership. We are an all-volunteer organization and need all autism families to share in the work ahead, please contact us to get involved. Read: California unprepared for wave of autistic children headed toward adulthood http://www.vcstar.com/news/2012/sep/22/california-unprepared-for-wave-of-autistic/#ixzz2nwC4BwJO Autism Speaks National Housing Survey http://www.autismspeaks.org/news/news-item/autism-speaks-announces-results-national-housing-survey |