Herb is a tireless advocate for IHSS. He is the Chair of the Governing Board of the IHSS Public Authority of Marin and President of the Board of Marin Center for Independent Living. An injury in a sailing accident in 1993 left him quadriplegic, but it did not take the wind out of his sails. He is an active member of the Bay Area Association of Disabled Sailors, and he has been receiving IN SPIRIT assistance since 2000.
Every year the disability community must rally to prevent cuts to IHSS, and Herb has taken numerous trips to Sacramento to testify before the Legislature. Thanks to supporters like Senator pro Tem Don Perata and Assembly Member Fabian Nunez, cuts to IHSS workers’ wages were prevented, but a 5% cut to program administration on top of previous years' cuts leaves county IHSS staff more pressed than ever. The grim budget deficit means proposed cuts are inevitable and advocates must take a deep breath and begin anew. IN SPIRIT is proud to help Herb so he can keep on marching and sailing.
As economic conditions have deteriorated since Gov. Schwarzenegger signed the 2008-09 budget in Sept., he is convening a Special Session to approve new cuts. He wants to reduce the state IHSS wage to $8 per hour, eliminate domestic services for over 83,000 recipients and eliminate or limit the "share of cost" for over 15,000 recipients. SSI payments would be reduced from $907 to $830 per month. If approved, the first cuts took effct Dec. 1.
One of IN SPIRIT’s goals is to increase awareness about our fellow neighbors and community members who are quadriplegic. Although they vary greatly, getting through their days is no easy task, requiring the help of others as well as rigorous self discipline if they want to stay healthy. Some are quite active and live independently, some live with family, some have ventilators and feeding tubes, some are unable to speak. Few have the resources to live without constant challenge. Here’s what some of our clients would like to share with you...
Geoff has muscular dystrophy and has received IN SPIRIT assistance for 20 years. "Being a quadriplegic means being dependent on others for EVERY SINGLE THING. This means giving up much of one's privacy and autonomy. It is extremely important for the quad to take NOTHING for granted, and to show appreciation for those who take care of others like me. IN SPIRIT enables me to justly compensate my caregivers. A decent wage is an essential part in finding and keeping desirable caregivers. It is extremely important to make people aware of this issue. This is a life and death issue -- especially for quads with respiratory issues."
Ronald has a spinal cord injury and has received IN SPIRIT support since1996. "I am having another mountain to climb. I have had a difficult urinary tract infection. With cutbacks on my insurance coverage for catheters, supplies and medications, it’s getting so hard. Thanks to IN SPIRIT for helping me so I can I get more of the things I need."
Charles has Multiple Sclerosis and has been with IN SPIRIT since 1998. "Provided that the brain is intact, perception of quadriplegia is worse than the actuality. Hands and feet, arms and legs, are nice to have, but they are not as crucial to leading a life of quality, provided there is radical acceptance. We lose our adult status in the eyes of many. Correcting and redirecting intentions requires patience and diplomacy. People who respond to us correctly are a boon and should be cherished. We must remain open and bear in mind that a free mind is spacious. We should live the life that is presented to us with gratitude for it and for those who make it possible."
Coni has ALS and has been an IN SPIRIT client since 1999. She has writen and published two books in the last three years.“ I need care 24/7 and have little privacy. It can be difficult when caregivers bring their personal issues to the workplace. It’s also hard to get out and socialize.” More about Coni's books
Aneice sufferd a spinal cord injury in 1982. She formed IN SPIRIT in 1987 to help herself and other quadriplegics. “Completely paralyzed persons live with a constant insecurity about being alone at crucial times. It is a daunting task to find attendants, arrange schedules and ensure that you have someone present when you need them -– especially if you cannot pay a reasonable wage. Those who live with family are more insulated from that fear, although dependence on family alone has it’s own challenges."
Steve has been dealing with quadriplegia since he was injured in1974 at the age of 18. He has lived independently since that time, finishing college and coaching high school basketball for 15 years. Earlier this year he fell and broke both legs while being transferred from his bed to his wheelchair. He could no longer function as independently and his IHSS allotment was insufficient to cover the extra care he required. He called IN SPIRIT for help, and we provided assistance for several months to help pay for more care, including someone to turn him in the night. We were pleased to lend a hand.
IN SPIRIT provided $112,285 for attendant care to 21 people. $12,791 was given for Special Needs like medical supplies, equipment, Internet service and other life enhancing supports.
Restrictive documentation policies and outdated “in the home” language governing Medicare claims are creating hassles for Durable Medical Equipment (DME) dealers and consumers. Reimbursement for power wheelchairs was reduced 27% in January 2007 and a proposed competitive bidding rule could make things much worse. Fortunately, advocates convinced the House of Representatives to delay its inception until 2010. DME dealers who continue to help people get the wheelchairs they need deserve our gratitude and respect.
Wheelchair users in Marin County will now be able to summon a private taxi. The Marin Transit Board purchased two accessible vans which will be dispatched by On the Move taxi service. To arrange a ride or get more info, contact On the Move at 415-485-1234. Good move, Marin Transit Board!
Congratulations to Bryan Myers of Woodacre! He purchased the winning ticket and is now the owner of the stunning Turkish carpet donated by Pam Bird of Bridges to the East. Shown above is our dedicated volunteer Valerie Fontenot who boosted sales by selling tickets in front of the Woodacre Post Office. Special thanks also to Vera Rossi who was a champion salesperson in the South Bay. The carpet was not a hard sell and raised $1980! THANK YOU, Pam, volunteers and ticket buyers. An extra salute to Pam Bird who also contributes textile sales proceeds to benefit Middle East Children's Alliance.
With a lot of teamwork and long hours, volunteers staged IN SPIRIT’s 13th annual and most successful Plant Sale and raised $7,500. The days before the sale were hectic as plants arrived from local gardeners, Marin Art and Garden Center, United Market, Fairfax Lumber, Sunnyside Nursery, Dale Kemp with exquisite orchids, and students of the San Geronimo Valley School. Volunteers transformed the abundant chaos into a glorious display as well as staffed the event. We were impressed! THANK YOU to Pam Bird, Karen Zaccaglini, Jean Kinsey, Carol Hodil, John Kaufman, Katie Rasmussen, Joan Green, Valerie Fontenot, Cathy Bleecker, Amy Valens, Dahlia Kamesar, Betty Wood and Marilyn Milos and volunteers throughout the year. Jill Tramontano showed her exquisite ceramic work and Lenore Lasher shared her lovely jewelry and collages. Glass beads from Marty Meade and the Arroyo Bead Collective again delighted buyers. Thank you for supporting the sale! We'll be back in May with surprises for us all.
Whether you walk, roll, run or sponsor, be a part of the Human Race 2009. Nancy Nichols and Snuey Pearlman de Fries were joined this year by Elisa Alverez to gather sponsors to support them in the 2008 Marin County Human Race. Their efforts raised $2300! Elisa relayed, "How lovely it was to spend a sunny morning walking for a worthy cause. It was my privilege to participate and raise money on behalf of IN SPIRIT." Thank you all for your contributions.
Thank you for supporting IN SPIRIT through another year. Our vital services are at great risk. The stock market and economic crisis means new dollars are more tight and competitive than ever. We survived our first year without the support of the Babcock Endowment, maintaining our commitments to our clients without dipping into the IN SPIRIT Preservation Fund. We will not be able to do so in 2009, however, without increased revenues. We are reaching out to the Marin community to help protect the well being of local quadriplegics. We are seeking donors, creative ideas and new energy to forward our cause, including applications from potential new Board Members.
I often think of Selkis, an IN SPIRIT client who died in 2000 at age 48. She was a dedicated IHSS advocate and often turned to me for advice in her struggle to get adequate care. She lived alone and could not afford to pay someone to put her to bed. One morning her attendant arrived and found that Selkis had passed away alone during the night in her wheelchair. How I wish we could have done more. We hope you can be there with us to prevent such sad situations. Your generosity has helped many quadriplegics remain safely in their homes for years. Your donations will continue to provide direct, hands-on support to those in need.