Dear Friends,
The heart of IN SPIRIT's work is helping quadriplegics with funding for attendant care and other essential services. It is also an important part of my job to be aware of how public homecare programs are organized and funded. As the aging population increases, more affordable in-home care options are needed. Without improvements in our long-term care system, the choice of living at home may be impossible for many, even though it is often less costly than nursing homes. In this newsletter, I have touched on some of the complex factors shaping long-term care policies.
While living independently is not appropriate or possible for everyone, we believe the quality of care and sense of freedom and well-being that can be gained with in-home care would be the preference of many if they had the choice. Meanwhile, IN SPIRIT pushes on helping local quadriplegics be healthy and happy living in their homes and communities. Thank you all for your part in helping bring them hope, dignity and peace of mind. We hope you will again support our work.
Aneice Taylor, Executive Director
Homecare or a Nursing Home? – It Should Be a Choice.
Changes Needed for Affordable In-Home Options

Many people prefer long-term care in their homes if they are unable to care for themselves. Our healthcare system, however, is unprepared to offer in-home care as a viable choice for our growing aging low-income population. Shifts in healthcare priorities and public policies will be necessary and will involve a complex maze of public programs, regulations and politics, such as those shown below.
Healthcare Spending Priorities
Elizabeth Bradley of Yale conducted a study that shows the US budget for healthcare is twice as large as its budget for social programs. Other developed nations, however, spend twice as much on social programs than healthcare, yet achieve better health outcomes. Her research showed that more spending on programs such as prevention, education and ongoing support for those at risk can show remarkable health outcomes. For example, attendant care for the disabled can prevent lengthy, expensive hospitalization for common problems such pressure sores and pneumonia.
LobbyingIn 1999 a Supreme Court decision upheld the rights of disabled people to live in the communiy rather than in nursing homes, if their doctor approved. In 2010 an unrelated United vs. Federal Elections Committee) ruled that corporations and unions have the same rights as individuals and are allowed to contribute to election advertising campaigns. Nursing home and health facility lobbyists can make large contributions to politicians that can affect legislation favoring nursing home profits rather than patients. Medicaid Nursing Facility Waivers In California there are Medicaid Waivers for people with severe disabilities to get proper care in the home if they are at risk of nursing home placement or already in nursing homes. The Waivers operates with a concept of cost neutrality, meaning the amount paid for homecare cannot exceed the cost of a nursing home. Unfortunately, the number of slots is capped, and the waiting lists have several hundred people wanting to live at home in their communities.
IN SPIRIT Extends a Hand for Respite Care

With your support, IN SPIRIT was able to respond to an appeal for help and begin giving Phyllis ongoing monthly grants for attendant care. Through our Financial Aid for Attendant Care Program, IN SPIRIT provided $52,824 in grants to 14 quadriplegics in fiscal year 2012-13.

Phyllis was enjoying retirement when she fell in her home in 2009. She remembers little except her husband Craig finding her and the paramedics taking her to the hospital. She had injured her spinal cord at the C5 level and was paralyzed. Upon returning home several months later, she and Craig began setting up their home and lives to accommodate her care. Phyllis receives Social Security disability benefits and Craig works part-time, making their income too high to qualify for IHSS*. They can only afford to pay a caregiver two hours each morning; the rest of Phyllis's care falls to Craig. After a few years, Craig was badly in need of respite time. They were told about IN SPIRIT and reached out for help. We began providing a grant for Craig to have a break two afternoons a week so he is free to run errands or rest. They say that even these small breaks are making a big difference.


Accessible Van is Paid Forward

An inspiring gesture from the family of Charles Fox, a longtime IN SPIRIT client with MS, brought new hope to another quadriplegic. After Charles passed away in 2012, his son James felt his father would have wanted his van to be passed along to another disabled person. Charles' wife, Veronique, also liked the plan, so James raised the money to refurbish the van and passed it along to IN SPIRIT to find the new owner. Allen Howard, who also has MS, is the grateful recipient.
Helping Allen acquire this wheelchair adapted van is an example of the variety of ways in which IN SPIRIT can help people with disabilities achieve more independence and mobility. It is a joy to be able to provide this support through IN SPIRIT's Special Needs Program. It has the flexibility to help individuals with very specific needs that are not funded by other services. Other examples of assistance this past year included physical therapy, a medical bill, medical supplies, family respite care, temporary emergency attendant care, one-month rental assistance, a wheelchair repair, and a contribution toward a car lift. This year IN SPIRIT spent $13,732 on special needs

 

 

Overtime Pay for IHSS Workers Comes at a Risk

A new federal rule requiring IHSS providers to be paid overtime when they work above 45 hours per week will go into effect in 2015. It acknowledges the important work of home care attendants and that they need to be better compensated. Unfortunately, the well-meaning rule could backfire and result in reductions for both IHSS workers and the low income Californians for whom they provide care.
According to the Governor's office, the overtime in IHSS will cost the state an extra $150 million annually. IHSS workers and recipients, unions, and advocates all agree that home care providers are underpaid and sometimes under-appreciated. There is concern, however, that the new rule could result in reductions in IHSS allotted hours. The dilemma– who will pay for the overtime. Over the last few years of state budget shortfalls, savings in the IHSS program have been accomplished by reducing the hours for IHSS recipients and workers.
The new ruling could particularly harm family members and relatives who provide care. Persons who require more than 45 hours a week of care have significant disabilities. Finding dependable, skilled workers for these high-need individuals is difficult. The family member providing care could be forced to take jobs out of the home to cover household expenses, yet still need to resume caregiving after work. It is often their dedication and IHSS that keeps the family and household intact.
Other IHSS Hot Topics
An 8% cut in IHSS recipients hours began July 2013 to continue through June 2014, then fall to 7% in July 2014, and end on June 30, 2015 if state revenues allow. The Coordinated Care Initiative is moving forward and managed care will begin in some counties in 2014.

Thanks to advocates throughout the state for their diligence and input in how managed care will
be implemented.

 

IN MEMORY OF SUE BELL

Sue Bell had MS and began receiving IN SPIRIT grants for attendant care in 1999 that continued to her passage in 2013. She treasured her independence and lived alone in an apartment, having attendants come in to get her up, feed her lunch, and back in the evening to put her to bed. She managed her disability with determination and a dose of humor, and her dedicated attendants often remained with her for years.

 

Plant Sale Surpasses Expectations

It happens every year. We are amazed and delighted by the response to our annual plant sale in May. More folks than ever were involved, and yes, we again topped our previous records, bringing in almost $15,000. It was all made possible by dedicated volunteers caring for plants and preparing for the sale, local gardeners sharing plants, and then the enthusiastic customers.
We would like to thank and honor Don and Sita Greer for the truckloads of delightful donations they have delivered to our door for several years. They love going to garage and estate sales gathering antique, shabby-chic and fanciful garden and household items. Eventually they ran out of room for all the treasures, so they decided to start donating the things they collect throughout the year to IN SPIRIT. Their donations are always a VERY BIG HIT.
More folks than ever brought plants, and we always discover new unfamiliar plants. Contributions included natives from Nancy Brown, Nancy Hanson and Charlotte Torgavitsky, seedlings from the local school through John Kaufman and Gina Smith, and many other local gardeners. Sunnyside Nursery, United Market, Fairfax Lumber and Home Depot also contributed. Tomato Dan produced an abundant tomato stock. The result was a large array of vegetable seedlings, flowers, shrubs, trees as well as pottery from Jill Tramontano, and glass beads from Marty Meade and the Arroyo Road Bead Collective. Joy Kendra made chocolate delights.
Every donation, small and great, contributed to an exciting Plant Sale.

Thank you all for supporting the sale. Special thanks to our hard-working volunteers who made it happen – Amy Valens, Karen Zaccaglini, Jean Kinsey, Tomato Dan Emery, Joan Green, Carol Hodil, Nancy Nichols, Laurie Chorna, Marilyn Milos, Tara Elfenbein, Valerie Fontenot, Sabena Elizabeth, Kathy Calaway, Karlon Kepcke, Kelly Durrant, Kathy Perkins.

BOARD NEWS
Brian Jacobson, an IN SPIRIT client for the last six years, will now be offering his time and energy as a member of IN SPIRIT's Board of Directors.
Barbara Cutler joined the Board in 1998 and is the parent of IN SPIRIT client Geoff Cutler who has had muscular dystrophy since he was a toddler. Barbara has been a hands-on advocate for not only Geoff, but others with disabilities, for over 50 years. She can no longer participate on the Board and we will miss her insight and bright spirit.
Thank you, Barbara!

Thank You to the following foundations
The Nathan Cummings Foundation
Fred and Annette Gellert Foundation
Bill Graham Foundation
New World Foundation
George H. Sandy Foundation
May and Stanley Smith Charitable Trust

 

Heartwarmers IN SPIRIT would like to acknowledge the supporters who make commitments to give a monthly donation. They are usually caregivers, family members or friends of quadriplegics and are generally low income. Thank you
You can be a Special Donor Fulfilling a Special Need If you would like to help someone who has a Special Need important for their health and independence, such as a wheelchair repair, medical supplies or piece of equipment, join our Special Donor Dream Team. We would inform you of an individual's need as it arises to see it you would like to make a contribution toward filling that need. There is no obligation or specific amount to be contributed. If you'd like to be a Dream Team Donor, please call, email or complete the coupon on the back and return to us.


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.