By Michelle Condit
Recently I attended a town hall meeting in Sonoma related to the closure of the Sonoma Developmental Center. State senators and assemblymembers were on the panel, as well as local representatives including the director from the Department of Developmental Services. The audience included local community members worried about what would happen to the property, as well as families of the residents who were experiencing or about to experience loved ones entering community-based care. Vacating of the center by its current residents was already a foregone conclusion. This left much of the conversation focused upon what would happen to the land. One member of the audience, however, did ask representatives to allocate proceeds from the land to follow the developmental disability (DD) population in the community.
Less than 1% of California’s DD population resides in institutions, the rest in the community. And with respect to people with autism nearly all (94%) reside with family members. No one doubts the staggering need for more community supports for this sometimes extremely disabled group.
The first two answers seemed fairly benign—without promises, but reflecting a sympathetic ear for the advocates’ plight to save services for individuals with DD. However, it was the final answer given by a state senator that to me summed up the realism of what was occurring. The sentiment: the money would end up in the general fund and the likelihood that the regional centers would recover 100%—well, it was not going to happen. He presented as a realist, though it was an unpopular response to many of this particular crowd. He let the audience know that the most that could be hoped for is creation of “adequate” services though he hated to use that word.
The statement led me to consider the following question. What are “adequate” services? I work within the service provider sector and my response would most likely differ from a family member with a loved one with DD, as well as from a taxpayer who does not have an affected family member. From experience I have come to recognize that by most of our standards and by the metric of our regulatory mandates, current funding does not foster “adequate” support services.
From my experience, the linchpin of “adequate” services for an adult with DD who requires and/or desires support is the person(s) from whom they receive direct support in his or her day-to-day life. This is true whether those caregivers are funded through the state or family members who often provide this for free.
It has been noted that the cost of caring for an individual at a developmental center has risen to $500,000 a year, compared to an estimated $25,000 to $300,000 in community care. That lower number can be attributed to many things, including free labor on the part of family members, vastly lower hourly rates for care (developmental centers featured well paid credentialed professionals, community care relies on minimum wage workers with no or minimal training), free family housing rather than independent living with market rents, and lower overhead. It should also be obvious that for the most part those remaining in developmental centers tend to have very complex disabilities, entailing higher costs no matter where they reside.
The failure to allocate Sonoma funds to the DD community is emblematic of our failing system that continually offers decreasing funding to the population it is obligated to support. Since I entered the field more than 15 years ago, new models based on individual choice and self-direction have become a central theme of service provision. However wonderful this alternate system sounds on paper, in reality it is woefully underfunded. In many regions it is becoming impossible to hire direct support workers at the minimum wages offered. And DD individuals cannot afford housing with their $900 per month SSI check.
Most importantly, a system of community care requires a workforce that is professionalized and possesses the skills that the person supported needs to learn or have executed for them. Skills include management finances, health and safety, cooking, and maintaining a household. “Adequate” to me denotes “maintaining.” With “adequate” services there is no guarantee of fostering an environment of growth and learning. It’s a model of bare subsistence without regard for the quality of life of the individual with DD. Many adult clients with autism and DD are very challenging, needing highly trained staff and often facilities appropriate for their sensory and behavioral needs. Those settings are evaporating with no replacements in sight. For non-profit service providers, fundraising is often needed to close the gap between revenue and expenses, including helping to fund desperately needed training for staff.
So I see the Sonoma closure not as a civil rights victory for adults with DD, but rather as a setback for our entire DD community. The money will flow to the general fund and not to support the urgent needs of our most severely disabled. While some champion the closure of Sonoma, we must be aware that the systemic underfunding of community care could easily translate to the neglect or horrors documented in some institutional living, but this time occurring silently within our local communities.
Michelle Condit works for a supported living agency based in the Bay Area. She is a member of the board of Autism Society San Francisco Bay Area.
Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.