Momentum - Fall 2012

Challenges
Seeking
support

Administration on Aging 202-619-0724 www.aoa.gov

ARCH National Respite Network archrespite.org

Department of Veterans Affairs
800-827-1000
ww.va.gov

Medicaid

www.medicaid.gov

National Association of Area
Agencies on Aging
202-872-0888 (office)
800-677-1116
(Elder Care Locator)
n4a.org

National Association of Home Care & Hospice 202-547-7424 nahc.org

National MS Society 1-800-344-4867 nationalMSsociety.org

The National Alliance for Caregiving www.caregiving.org

housekeeping services, home modifications, accessibility equipment and personal assistance—and then begin collecting information on them. The more you know about these services, how to contact them and how much they might cost,

the more you will be prepared if the need arises.

Government-based programs can help with long-term care costs, if you’re eligible. Medicaid does cover in-home care, but you must have exhausted all existing financial resources to qualify, Northrop says. Only about 5 to 10 percent of people with MS qualify for Medicaid and even if they do qualify, some states are cutting back vital Medicaid-funded long-term services and supports due to budget constraints, says Laura Weidner, director of Federal Government Relations for the Society. (For more information on financial planning and government programs, see “Banking on a life with MS,” pg. 50.)

The National Family Caregiver Support Program funds support services for caregivers, but to be eligible, the person who needs care must be at least 60 years old or have Alzheimer’s disease or a related disorder, or the caregiver must be a non-parent who is 55 or older. If you’re a veteran, check with the U.S. Department of Veterans Affairs and ask what support it offers. If you work, ask your human resources department if you’re eligible for disability insurance or time off through the Family and Medical Leave Act, which provides certain employees with up to 12 weeks of unpaid leave per year. If you have long-term care insurance, check out the benefits.

Pushing for change

Another important service is
respite, which is professional
short-term help that gives
caregivers a much-needed break.
Bonnie Danowski realized
how burned out she was after
nursing her husband through
an 18-month exacerbation. “At
the end of that time, a counselor
said, ‘You need to take respite.’
I didn’t have a clue what she was
talking about.”
The federal Lifespan Respite
Care Program, enacted in 2006,
funds state-based respite care
that keeps families healthy and
allows the person living with
a disability to remain in his
or her community and avoid
premature admission to costlier
nursing home facilities. So far,
30 states and the District of
Columbia have received grants.
“We’re working to increase its
funding so family caregivers
can be properly supported,”
Weidner says.

Some caregivers and people with MS have joined the advocacy efforts, including Gary and Kim Campbell, who helped change long-term care policy and protect funding for home and community-based services in Texas. “Now Texas has respite care,” Gary says.