IN SPIRIT 2012 Newsletter

Dear Friends,
When I was injured in 1982 at age 37, it was unknown if quadriplegics could survive into old age. I felt if I made it to 50, my children would be young adults with a good chance of making it on their own. When 50 rolled around, I thought, "how about making that 60." Now I'm thinking, "let's try 70."
Over the last 25 years, like other IN SPIRIT recipients, my health, peace of mind and longevity have benefited. Its support has allowed all of us to have the stability and quality of attendant care that promotes our health, and some of us are now sharing passage into senior years. Regardless of our ages, IN SPIRIT recipients bond as an extended family by sharing our mutual experiences with others that truly understand the challenges of quadriplegia.
We are all very grateful to you for supporting IN SPIRIT over the years and helping make our lives positive and hopeful, as well as bringing relief to our families. It's a more challenging financial arena now, and we hope you will again help us continue to meet the needs of the vulnerable quadriplegic community.
Aneice Taylor, Executive Director


Celebrating 25 Years of Service to Quadriplegics

When IN SPIRIT was formed in 1987, we had no idea how it's future would unfold. Funding was the biggest question mark; we knew the need was great. How pleased we are that 25 years later IN SPIRIT has impacted the lives of quadriplegics in profound and meaningful ways on a daily basis, year after year. It has helped bring stability, health and peace of mind to those who had little hope of improving their physical and financial dilemma.
Since 1987, the generosity of foundations and individuals made it possible for IN SPIRIT to provide $2,230,000 of support directly to quadriplegics for attendant care and other essential needs. We were given initial boosts and then continuing support from the Rex Foundation (Grateful Dead), Babcock Memorial Endowment and Marin Community Foundation. Over time these sources drew to a close requiring us to reduce services while we sought new avenues of support. Funding is now more challenging and the future is less certain, but we are persevering. In our 2011-12 fiscal year, $58,300 was provided to 14 individuals for attendant care.
The successful longevity of IN SPIRIT promotes the longevity of its clients. The aging process calls for even greater vigilance regarding respiratory problems, serious pressure sores and urinary tract infections. For some, ventilators and feeding tubes become necessary.
Geoff, a monthly grant client since 1989, has used a ventilator and feeding tube for six years. As a toddler with muscular dystrophy, his mother was told he would not survive more than a few years. He just celebrated his 50th birthday. Although Geoff says having a ventilator does require a higher skill level of care, he has more stamina and fewer respiratory problems, and he is happy to be alive and not in a nursing home!
How ventilator users view their quality of life may surprise you. A 1994 study compared how 42 quadriplegic ventilator-users and 45 quadriplegic non-ventilator users rated their life satisfaction. A control group of medical professionals were asked to predict how these two groups would rate their quality of life. Both groups indicated higher life satisfaction ratings than had been predicted by the medical professionals. Moreover, the vent-users felt life was more interesting, enjoyable and hopeful than the non-vent users.


IHSS In Line for a Statewide Revamp - Advocates have serious concerns

In July the state passed the Coordinated Care Initiative (CCI) to restructure IHSS and other long-term care services into managed care plans in each county. The goal is to better coordinate care at a more sustainable cost for persons who receive both Medicare and Medi-Cal (known as dual eligibles) and who are among California's highest need residents with chronic health conditions. It will begin implementation in 2013 in eight counties – Alameda, Los Angeles, Orange, Riverside, San Bernardino, San Diego, San Mateo and Santa Clara. After reviewing proposals from private home care agencies, county and other health plans, the state selected the managed care plans in each county to implement the CCI. All counties must have plans in place by 2015.
By integrating a variety of services with a single point of entry, the state hopes to improve the continuity of care and maximize IHSS consumers' ability to remain in home and community-based settings. Participating health plans will receive a capitated monthly payment to provide access to all covered preventative and medically necessary services. A coalition of advocacy groups has provided input to the state's CCI plans and has several serious concerns, including burdensome assessment processes, oversight responsibility, and lack of clear "opt out" procedures for those who do not want to be in managed care plans. Advocates want to be sure the state is not more concerned about meeting its budget goals than the well-being of vulnerable elderly and disabled Medicaid recipients. It is important that the guiding IHSS principles of choice and self-determination are not undermined. Stakeholders will need to stay informed on developments in their own counties. To learn more go to: www.calduals.org/

Local Quadriplegic Has Stem Cell Treatment

Abelina, a Novato resident, has worked very hard since 2007 to recover from a serious spinal cord injury which resulted in quadriplegia. She is very grateful to her friends and community who rallied to help her achieve her goals. After a long hospitalization including time on a ventilator, she is stable and in a nice home environment with her children. Abelina is determined to maximize her abilities and uses exercise equipment regularly to regain more strength and movement. She researched stem cell therapy and was able to travel to the Stem Cell Institute in Panama in 2011 for her first treatment. It consisted of harvesting stem cells from her bone marrow and injecting them into the spinal cord, as well as daily physical therapy. She went again a few months later for the second phase of treatment and could not be more pleased with the results – increased movement in her arms and hands and sensation all the way to her toes. She is gathering support to complete her final treatment in Panama.

 

Through its Special Needs Program, IN SPIRIT has assisted Abelina with a wheelchair repair and Hoyer Lift. In the past year, this program assisted 10 individuals with a variety of important needs, including adaptive equipment, medical supplies, respite care and emergency care.

 

Schwann Cell Spinal Cord Injury Human Trials to Begin

Schwann cells are in the peripheral nervous system and go to and from the brain to the muscles and sensory nerves. They insulate nerve fibers and are necessary for electrical transmission in the nervous system and are essential for regeneration of the spinal cord. The Miami Project to Cure Paralysis has received permission from the FDA to begin a Phase 1 clinical trial to evaluate the safety of transplanting human Schwann cells in patients with recent spinal cord injuries. The Schwann cells are obtained from one's own body by a biopsy of a nerve in one leg. The Miami project is one of many groups of scientists collaboratively dedicated to moving forward to prevent or reverse the effects of paralysis. For more information, www.themiamiproject.org

 

Hats off to Maggie Dee, Disability Rights Advocate!

When we need information related to IHSS legislation and other disability issues, it’s Maggie Dee we call! Maggie had a spinal cord injury in 1983 and continues to deal with other serious health conditions. For 26 years she has been a DJ on a KUSF radio show that focuses on disability issues. Working through the Democratic Party and advocacy groups, she is well informed on legislation and has often collaborated on outreach with IN SPIRIT. Thank you, Maggie, from all of us who rely on attendant care to stay out of nursing homes.

 

PLANT SALE HITS THE JACKPOT

Our most successful Plant Sale yet. The dedicated efforts of IN SPIRIT volunteers throughout the year brought our booty to $11,600.
Our volunteer staff met early in the year to share seeds and decide what to plant. The greenhouse got an overhaul by architect volunteer Leo Den Ouden who replaced the collapsing walls and added a foundation. He donated PVP pipe with salt that gathers heat from the day to add warmth at night. John Kaufman added a new sprinkler system and we were good to go.
We gratefully welcomed offerings from the SGV Presbyterian Church Deacons, native plants from Nancy Brown, Nancy Hanson and Charlotte Torgavitsky, seedlings from the local school from John Kaufman and Gina Smith, Heather Simon with plants from the Gardner's Guild, and many local gardeners. Sunnyside Nursery, United Market, Fairfax Lumber and Home Depot also contributed. Tomato Dan produced an abundant tomato stock. A truckload of garden treasures from Don and Sita Greer were crowd-pleasers. Jill Tramontano offered her pottery, and Marty Meade shared beads from the Arroyo Road Bead Collective. Ann Jones and Cathy Calaway handled signage. Joy Kendra made bliss bars and volunteers made brownies.
Every donation, small and great contributed to an exciting and successful Plant Sale. Thank you all for supporting the sale. Special thanks to our core volunteers who made it happen – Amy Valens, Karen Zaccaglini, Jean Kinsey, Dan Emery, Joan Green, Carol Hodil, Nancy Nichols, Laurie Chorna, Marilyn Milos, Marcia and John Gunnarson, Tara Elfenbein, Sabenah Elizabeth, Kathy Calaway, Karlon Kepcke, Kelly Durrant, Kathy Perkins, Jill Tramontono, and photographer Michel Kotski.

A special addition to the sale this year was organized by the Woodacre Garden Club who hosted "an open garden" at the Oval Park in Woodacre to showcase their native plant garden. They sweetened the event by selling baked goods for IN SPIRIT.

 

This year's Plant Sale was dedicated to Pam Bird who passed away in March. Pam was one of our first patrons. She contributed truckloads of plants over the years from her gardening business and personal greenhouse and donated Turkish carpets from her business Bridges to the East. Pam was a caring and grateful person who impacted many with her encouragement and generosity.

 

Thank You to the following foundations

Bill Graham Foundation
Fred and Annette Gellert Foundation
Larry L. Hillblom Foundation, Inc.
New World Foundation
George H. Sandy Foundation
May and Stanley Smith Charitable Trust

IN SPIRIT needs your support to continue the monthly grants that help quadriplegics live in their homes with stable attendant care and be active in their families and communities.