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Care deficit worsens [HD] families' problems

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  • Jean E. Miller
    The HDSA San Diego Chapter always offers excellent articles on their website http://hdsasandiego.org/ The one below on the existing Care deficits in HD
    Message 1 of 1 , Jul 1, 2007
      The HDSA San Diego Chapter always offers excellent articles on their website http://hdsasandiego.org/ The one below on the existing Care deficits in HD families I'm sure hits "home" with every person living with HD expressing many of our own thoughts on the need for more family service support. The HDSA San Diego Social Worker Lisa Synder's comments should become a national campaign "HD is not a one-phone-call disease. It can go on for decades"! I like that quote so much, I made the attached card to use! You can add a phone number or cut info with your own photo program!

      Care deficit worsens families' problems
      Article Date : 06/10/2007
      HD families need hope, community, and caring support.

      Families hit by Huntington's disease badly need more and better services to help alleviate the despair and confusion that this incurable condition causes for the ill and their loved ones.

      That's the assessment of one of San Diego's most experienced professionals in the field of Huntington's disease care. Lisa Snyder, who holds a Master's Degree in social work and practices as a licensed clinical social worker, began working with HD patients and their caregivers as an intern at the University of California, San Diego (UCSD) in 1986 and joined the UCSD staff the next year. Since then she has watched hundreds of patients go through the painful changes wrought by HD. She is currently the social worker for HDSA's Center of Excellence for Family Services and Research at UCSD.

      Lack of awareness about HD, a shortage of good long-term care facilities in the area, and, above all, the cost of providing care mean that families must struggle to get help, Snyder says.

      "Last year, our Center of Excellence served over 250 families facing HD in our clinic, not counting the hundreds of HD related phone calls and emails we received," says Snyder, who is primarily employed by the Shiley-Marcos Alzheimer's Disease Research Center at UCSD. "HDSA funds two hours of social work a week to address the needs of these families. The State of California contributes a few hours a week more of funding through the Genetically Handicapped Persons Program. It's pretty sobering."

      Health professionals and social workers need to address the stress-causing factors affecting HD families so that their "despair is infused with a bit of hope, community, and caring support," Snyder says. She adds that HD families need clear guidance on many fronts. They can become confused because of the disease's many variables and the many kinds of organizations they must rely upon for help.

      "Sometimes a single family with HD deserves many, many hours of our time," she says. "It's very hard to do a quick problem-solving approach with HD. It's not a one-phone-call disease. It can go on for decades. I am now seeing the sons and daughters of the patients that I worked with in the late 80s and early 90s. That's the nature of the disease."

      Snyder meets with patients and their families to evaluate their needs. She then spends considerable time on the phone seeking help with employment, disability and other health care benefits, shelter, caregiver respite, and the many situations that arise in a household with a HD patient. One of the biggest challenges is finding long-term care facilities.

      "I once spent all day calling well over thirty facilities in San Diego and all of them said 'no' to a Huntington's patient," Snyder recalls. "There is a bias against HD. There may have been one challenging resident previously and that has set a bias against HD for that facility. Or many facilities turn away people with HD because they can't manage a younger patient in a geriatric facility."

      Only Edgemoor Hospital, a public skilled nursing facility, and a handful of other long-term care facilities take in HD patients, she adds. Snyder says that it is especially difficult to find care for HD people who have no family support. "Those are people who can end up in our prisons or in psychiatric ward or on the streets," she says. Some HD patients end up in the hospital with acute care needs but are then discharged with no place to go.

      "The people without family support often don't have the capacity to seek out resources on their own," Snyder says. "The person with HD is struggling with symptoms and just trying to get through the day."

      The high cost of care is another barrier that HD families must overcome. The poor get some public assistance, and the well-off can afford to hire private care. "It's the families in the middle that get squeezed trying to pay for the cost of care, whether that be daycare, someone coming into the home, therapeutic activities, or ultimately long-term care," says Snyder. "Because of the disease, many of these families have not acquired considerable resources. Unlike many other dementias, HD strikes at the prime of one's life, where you normally build some kind of financial cushion for the future. Family members have to put their resources into the disease at the same time that they raise children and sustain a full-time job to support the family."

      Care facilities that accept HD patients often do not offer adequate programs. The patients are usually placed with people "who are decades older," Snyder says. "It's hard to find good peer support for people with HD."

      One invaluable organization in San Diego that lends help to HD families is the Southern Caregiver Resource Center (SCRC). As its name indicates, the SCRC assists caregivers and is not funded to work with HD patients or those at risk for the disease.

      "We are fortunate in the state of California to have the network of Caregiver Resource Centers," Snyder says. "That has helped supplement our support for HD families. Other states are not as fortunate to have those services." Even so, the SCRC system spends only "a fraction" of its time on HD due to the many other brain disorders it covers.

      Another sign of limited resources is the influx of patients and inquiries for help from other regions, Snyder says. "Social workers contact us frequently from other counties and other states," she says. "We get families who fly in from Nevada because of the reputation of Dr. Jody Corey-Bloom, the center's director." Families from Los Angeles and northern California also have gone to the center for care.

      To help alleviate the HD care deficit, Snyder says, fundraising efforts should include specific earmarks for care. There must be a "delicate balance" between research for treatments and the support of families currently affected by the disease, she adds.
      Please note: Lisa's comments on the HDSA funding 2 hours per week of social work will vary depending how the HDSA Center of Excellence budgets their $50K per year grant money. In some CoE's the budget for a social worker may be more, or it may be less. California is fortunate to receive funding for a few more hours per week through their Genetically Handicapped program! As far as I could determine, California is the only state with this program which specifically includes HD[http://www.dhs.ca.gov/pcfh/cms/ghpp/ ] although Nebraska does have a Genetically Handicapped Children's Program [http://www.hhs.state.ne.us/chd/mhcp.htm%5d.

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