The Autism City: Disability Services Arrive at Crossroads

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n California, the Department of Developmental Services (DDS) oversees a vast network of community-based services for over 333,000 youth and adults with developmental disabilities. Other states have similar sprawling networks—nearly all rooted in disability inclusion theories of the reformers of the 1960s and early 1970s.

Today, these networks are being buffeted on all sides: soaring caseload numbers and budgets; frustration by service providers with high client-to-staff rations and rapid turnover of personnel; and on going fear of clients and family members that options will be reduced at any time. “The disability services system is at a crossroads”, explains Rick Rollens, a representative of service providers, and expert in disability services and costs. Indeed, this fall task forces are being launched in several states, including California, to identify how disability services might be delivered differently in the future.

The closing of the large state institutions for adults with developmental differences was envisioned to usher in a new era of inclusion and community services, and one that would be financially sustainable. What happened and where does the system go from here?


Part I: How the Disability Services System Came to be Overwhelmed

Cathy Gott is a prominent autism activist, based in the Los Angeles area. The wife of former Los Angeles Dodgers pitcher (and current Phillies bullpen coach) Jim Gott, she has been instrumental for nearly three decades in creating autism projects for youth and adults in education, social inclusion and housing.

Gott became involved with the autism community in California in 1991, when Jim’s oldest son was diagnosed with autism. Three years later, Jim and Cathy’s first son was also diagnosed with autism. “We knew nothing about autism, and to help me cope, I reached out to specialists and other families affected by autism. I was overwhelmingly inspired by Connie and Harvey Lapin. Their son was in his 20s at the time. People like the Lapins were pioneers in establishing the Lanterman Act. I was in my 20s then and I felt it was my duty to continue their legacy and do my best to make things better for the next generation.”

In 1996, Gott founded Education Spectrum, to assist parents in navigating the K-12 education system, and she recalls the hunger for the services. She recalls, “We had two clients and two school district contracts. We had no website, no social media and never advertised. Word spread quickly—most mom-to-mom in waiting rooms of speech and OT therapy sessions. In 2 years, we had 200 clients, and in 5 years, we had nearly 400 clients and more than a dozen school district contracts.”

In 2007 she started Danny’s Farm, a petting farm aimed at children with autism and other developmental differences, and providing employment, internships and volunteer opportunities for adults with developmental differences. Today, she spends much of her time with ETTA, a major provider of support services for adults with autism, and is a volunteer commissioner on the Los Angeles County Commission on Disabilities. Though Gott possesses a preternaturally upbeat character, she increasingly worries about a coming crack-up of the DDS system:

“The future of DDS in California scares me. The low wages to the direct support staff cause rapid turnover. The underfunded Regional Centers and their service coordinators don’t have the time to deal with the day to day issues of our loved ones. The instability of service coordinators is troubling. Quality organizations providing services have waiting lists.”

“This is what keeps me up at night. This is what keeps thousands of families up at night. How is it that a tobacco tax can successfully fund an effort to provide universal preschool, and we can’t come up with a solution to care for our state’s most vulnerable population. How can we even think about cutting back on services? People don’t ‘overcome’ developmental disabilities. There is no cure. Why aren’t we planning for the growing numbers of people affected n our state? DDS is not sustainable…,do the math”.

The math that Gott refers to starts with the sharp rise in individuals with significant disabilities who are becoming clients of DDS. Between 2014 and 2019 the number of individuals enrolled for DDS services grew from 256,216 to 333,010, a 4.7% annual growth, and in the upcoming year is expected to reach over 350,000 clients.

The dramatic rise in autism diagnoses is the main driver of the caseloads. An estimated 70% of new cases are individuals with autism. Up through the early 1980s, autism cases were a small part of the DDS population, less than 5%. Today, one in three DDS clients are individuals with autism.

Beyond the enrollment numbers are the increased utilization of services. California has a statutory entitlement to services for individuals with qualifying development disabilities, irrespective of income. Expenditures for services have increased from $3.9 billion to $6 billion in the past five years, an average annual growth of 9%, far outpacing the client growth as well as the growth rate in the use of other social services.

Expectations of inclusion continue to rapidly evolve even during the past five years. New ideas on inclusion are driving increased use of Applied Behavior Analysis and other pre-school services, other K-12 education services, and transition services. They also are driving the more expensive services for adults, in independent living, housing supports, and employment.

Service providers, in turn, are finding themselves caught between service demands and tight reimbursement rates—even with the DDS budget increases. Barry Jardini is the director of government affairs for the California Disability Services Association. There are more than 16,000 providers of services to DDS, and the Association represents around 90 of the larger providers. He notes that beginning in 2008 with the Great Recession, reimbursement rates were frozen for a number of years, and are just now coming back to pre-2008 levels.

In 2016, when the state legislature added $400 million to the DDS budget, it also mandated a “rate study” to address the provider concerns about low wages, turnover, supervision and quality of services. The “DDS Vendor Rate Study and Rate Models”, delivered in March of this year, agreed that the existing reimbursement structure was no longer supporting a system of quality service provision. It pegged the additional funding needed at $1.8 billion annually. After closely reviewing the study, the response of the major providers, and others in the system, was that even the $1.8 billion underestimated the needed funding.

Part II: What Will the Next System of Disability Services Look Like

This is not the first time that the disability services system has been described as being at a crossroads. In the early 1960s, reformers, using this term, called for new service delivery systems as alternatives to the state hospital system--then with more than 13,000 residents and a lengthy waiting list. The legislature formed a “Study Commission on Mental Retardation”, whose report issued in 1965, The Undeveloped Resource: A Plan for the Mentally ret*d of California, set the stage for the community-based system of the past fifty years.

The next system will be designed by stakeholders, as it should be--especially with the growing self-advocacy by clients. This month, the DDS is establishing a series of work groups to consider what’s next. It is seeking out adults with developmental differences, family members, service providers, university researchers to participate.

While the next system will be the result of a process, a number of broad themes can be identified at the start of this process. These themes center on the roles of extra-governmental associations, cost controls, technology, funding, and employment. Let’s just say a word on each.

Since its formation, the current system has benefited from a very active group of volunteer associations, contributing time and resources. California’s Governor Gavin Newsom a few years authored the book, Citizenville, a main theme of which is citizens taking it upon themselves to solve problems, rather than relying on government. This is as true in the disability field as anywhere. Going forward a challenge will be to develop volunteer participation among all socio-economic groups. Everyone can contribute something, and should be expected to.

All government benefit systems need significant service controls. In my experience, the disability services are subject to much less misuse than other benefit and health care systems. However, as the disability services system has expanded in treatments covered, providers have rushed into the system with therapies and education services of questionable value (just as under other government-covered health care). A next system will develop more effective quality control structures.

Technology has not played a major role in improving disability services. That should change. The next system will more fully harness the creativity in the private sector to improve service quality and reduce costs.

There is no question that some form of new dedicated funding source is needed. For the disability system to go hat in hand each year for General Fund increases is not a recipe for sustainability. In California, dedicated sales taxes have been voted for targeted services, such as increasing pre-school services (tobacco tax), and for increasing health services to low income Californians (cigarette tax). The next system will need to go directly to the voters, and make its case. It will need to present a thoughtful and more complete system of inclusion.

Which brings us back to Cathy Gott. Gott’s current project is an autism-focused 64-unit residential complex in Los Angeles. The project combines market-rate units with units for adults with autism, some of these units subsidized. It incorporates a number of the themes noted above, especially the role of community-volunteers. At its root, it offers a fuller next stage of inclusion, physical, social, economic. Listen to Gott describe:

“We are launching a new model for inclusive, independent apartment living in the heart of Los Angeles. We are designing a housing experience for people with disabilities that promotes growth, joy, and friendship. The project will be a conversation changer that doesn’t ask ‘How do we include people with differences? But declares, ‘Let’s grow together!’”

And she adds, “This cutting edge, upscale, beautiful residence that also builds a compassionate, loving, deeply connected community is where we plan to move our son.”

I wonder what an Autist city would be like. Car free and quiet, I'd hope.