What services and programs does it take to maintain independence for an elderly or disabled person?
Mike Collins
"And yet we treat important people in our lives as second class citizens," he said. "Translators, IHSS" (In-House Support Services caregivers) "and independent living center workers are all underpaid, and usually get no benefits."
Collins called for links to unite the many duplicate systems and groups working for change, and addressed issues of sexuality, public transport, stereotypes and housing accessibility needs. He also stressed the need to work with politicians:
"They will listen to you," he said. "You're a voter and you're a taxpayer and you deserve to be heard.
"I hope this becomes an annual event," Collins told the nearly 150 attendees. "This is a lot of people, folks, when it's so hard for some of us to even get out of bed in the morning."
Also speaking was a panel of community leaders which included Joan Kilburn of the Area Board on Developmental Disabilities, Jo Anne Weber of the Commission on Aging, Marin Center for Independent Living President Daniel Barnes and College of Marin student Nicole Follin.
Follin, who suffered a brain hemorrhage six years ago as a 19-year-old Virginia Tech student, called College of Marin's Disabled Students Programs and Services "my best support network -- physically, mentally and emotionally."
She's glad she mustered up the courage to move to California in spite of her wheelchair and vision and memory problems, but there have been some difficulties navigating the fragmented system of separate resources. She told about fighting for two years to get a curb cut and a safe crossing at the bus stop on Sir Francis Drake Boulevard across from College of Marin. At last, the curb cut was in place, and a push button stop light installed at the crosswalk -- whereupon Golden Gate Transit moved the bus stop to another block.
Kilburn spoke about supported living for people with developmental disabilities, and Weber talked about family caregivers.
"When someone gives care 24 hours a day," said Weber, "they end up needing care themselves."
Weber also quoted Gandhi: "Be the change that you want to see in the world."
Barnes, who became a quadriplegic when he was run over by a four-wheel drive vehicle while taking a nap in a mountain meadow, talked about IHSS workers.
"They deal with the gritty real-life stuff," like bowel care and broken catheters, he said, but in Marin County they get $5.75 an hour. Not surprisingly, the quality of care has declined.
"I've been robbed, been abandoned," said Barnes, "but I've also met some of the most caring and generous people. We have to get attendants in this county a living wage."
Nate Miley, who sits on the Oakland City Council and is Executive Director of United Seniors of Oakland, was the lunch speaker, addressing issues of paratransit and pedestrian safety.
In the afternoon, people broke into brainstorming groups and wrestled with the topics of technology, housing, transportation, medical issues, home based workers and universal design.
The forum was organized by Disability Rights, Enforcement, Education, Services (DREES) and the Marin County Department of Health and Human Services, Division of Aging. Major Sponsors were the California Department of Health Services and the California Telephone Equipment and Loan Program. The chief organizer was Patrick William Connally of DREES, and College of Marin's Disabled Students Program Coordinator Marie McCarthy sat on the Steering Committee.
The Final Report on the forum will be posted on www.dizbiz.com.