Sen. Jim Beall sent Gov. Jerry Brown a letter signed by a bipartisan majority of the Assembly and Senate seeking a 10 percent increase in payments to care providers for 280,000 Californians with developmental disabilities.
On June 15, the Legislature passed a budget that included an increase of a little over 2.5 percent for these programs. The next day, however, Brown and the two houses’ leaders announced a “deal” that deleted this increase, calling for a special session and linking the prospects for increased funding to a tax increase on managed care organizations.
Once again, people with developmental disabilities and those who serve them are on the outside looking in.
While the cost of living has risen by more than 30 percent during the past 12 years, the state has provided exactly one increase to programs for Californians with developmental disabilities.
I see firsthand the impact of these programs being ignored. As the parent of a young man who just completed high school and faces these challenges, I am hopeful and scared for his future and the future of others I have met in this community.
As a volunteer board member for a 63-year-old agency, I know how difficult it is to maintain quality staff and services in the face of this lack of support.
The budget “deal” dedicates $530 million to serve 1,000 people with developmental disabilities who live in outdated, state-run institutions such as Sonoma Developmental Center. And that’s where the story takes a horror-film-like turn.
Some of these developmental centers, formerly called state hospitals, have been the scene of horrific events, such as rape, physical abuse and deaths under cloudy circumstances.
In one heartbreaking case, a woman with intellectual disability was sexually assaulted and became pregnant. According to reports, the facility failed to do a rape kit, so potential evidence was lost, and the primary suspect fled the country. The family now raises her child.
An autistic man’s neck was broken to the point of paralysis and, ultimately, death. The state settled a wrongful-death lawsuit with the man’s family. These stories and more were recounted when lawyers representing the Center for Investigative Reporting sued to force the state to release 900 unredacted pages documenting abuses in these institutions.
The model of care has been so poor that the federal government decertified some of the state-run units and cut off millions in funding. California taxpayers pay even more to operate units that the federal government deems unfit, with average annual per-person costs approaching $550,000.
Today, more than 4,300 state employees serve the 1,000 people remaining in the 24-hour, seven-day-a-week institutions. As of May 7, the list of decertified units had grown from four to 11, though a temporary reprieve on funding of seven units was obtained. Keeping these units open is unacceptable and fiscally irresponsible.
Brown addressed this issue by using the budget revision in May to set timelines for closure. The Legislature added language stating that as the institutions close, the resources should shift to starved community-based programs.
Abuse does occur in community settings. This population is vulnerable, and attackers should be punished harshly. When abuse is reported in community-based programs, they are closed and predators are fired, arrested, prosecuted and punished.
Brown’s answer to close the developmental centers is right, and he should support the Legislature’s intent. The $530 million used to keep the institutions open should be shifted to help all people with developmental disabilities live fulfilling lives in our communities.
The feds would pay half the cost of care for every person who moves from one of the federally defunded units to a community-based program.
Funds from the property and assets of empty institutions also should be dedicated to serving this population.
Closing institutions and putting more resources into community programs is consistent with every civil-rights philosophy, court ruling and gain made on behalf of people with developmental disabilities. We have a chance to produce a sequel to the horror film, one with a much happier ending.
Carl London is a parent, lobbyist, advocate for community-based programs, and a board member of InAlliance, a Sacramento-based agency that serves people with developmental disabilities. Carl.firstname.lastname@example.org