Column: The Intellectual Disability Community Cries for Help

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Intellectual disability is a condition characterized by significant limitation in intellectual functioning and in adaptive behavior. Formerly known as mental retardation, this disability manifests before age 18 and impacts the ability to communicate, socialize, and take care of oneself.

A few decades ago, it was common to hear doctors tell parents that the best place for their child would be an institution. Now, with the right training and education, people with intellectual disabilities can learn to do things on their own and even hold jobs.

But while the perception and its label has changed over the years, funding for agencies that provide services for this community has dropped severely in the last decade. Moreover, intellectual disability advocates express great disappointment with California Governor Jerry Brown.

Tony Anderson, Executive Director at The ARC of California, an advocacy agency for parents of people with intellectual disabilities, states that governor Jerry Brown, in the end of the budget process, convinced the legislature to remove the developmental services increase and find a way to fund it in a “special session.” This was something the leadership in the Assembly, and the Senate, expressed optimism for. However, it didn’t bring any fruitful outcomes. The governor refused to use the budget estimates from the Legislative Analyst Office and used his own numbers; figures that are already over $700 million under actual state revenues.

“During the Special Session,” Anderson said, “there were six bills introduced by republicans and democrats that would provide funding increases for developmental disabilities, and only two received a hearing and neither received a vote on the floor. In just over the last four years, we have lost 500 group homes for people with developmental disabilities, thousands have lost their community day programs, and now almost 100,000 people are living at home with aging caregivers.”

For workers in the intellectual disability community, the last rate increase was given in 1999. However, in 2006, the state gave a wage pass through, yet removed it for four years starting in 2009. Today’s provider rates for most of the community programs are based on cost reports from 2000 -- meaning they are operating with rates based on the cost of providing services in 1999.

Additionally, the group homes for people with developmental disabilities currently operate with rates established back in a time when the homes used to support less people. Funding as a whole has increased each year because the population increases yearly, and once you’re in the system, you never lose your disability. Thus, you never lose your eligibility.

Presently, there are an estimated 290,000 people with intellectual and developmental disabilities in California’s community system. This includes both children and adults with intellectual disabilities, such as cerebral palsy, autism, down syndrome, epilepsy, and others.

Recently, openly gay Senator Mark Leno expressed his support to The ARC San Francisco by supporting a 10 percent across the board increase to save this service system -- a move that has not been embraced publicly by Brown.

“While the governor has never expressed any support,” says Anderson, “we believe the legislators are collectively a powerful body of policymakers who could fight for this community, against the governor’s resistance. Please urge your legislators to repair the developmental disabilities system and ask the governor to fully fund the 10 percent increase to fix this broken system.”

Belo Cipriani is a freelance journalist, the award-winning author of Blind: A Memoir and Midday Dreams, and a spokesperson for Guide Dogs for the Blind. He was voted “Best Disability Advocate” in the Bay Area in 2015 by SF Weekly. Learn more at BeloCipriani.com.


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