Representatives from home health care agencies, social service agencies in
your area would be excellent speakers for PD support groups......church
groups, Rotary, Kiwanis, service organizations etc......who are looking for
speakers.
Unlike the Udall bill where we focused on PD research/education $$....We need
to unite our messages with hundreds of others needing care....BEFORE we
ourselves need it. Unfortunately, when the need is imminent, we are often
too overwhelmed by today to be able to do the lobbying/calling etc. Any
person could have an accident/
new health problem today that would require inhome care for an extended time.
A recent article in the Nebraska newspapers, as well as the explanation we
received from the social worker at UCSF a few years ago was.....the
guidelines are a bit vague for a good reason:
Only $X is available for a given geographic area to be spent for care:
How many people need care in that area?
How much care is needed by each patient?
A local agency may have monthly requests for care totalling perhaps $50,000
(this is a figure drawn from midair).....and may have only received $14,000
allocation.....difficult decisions have to be made. In a situation of this
type....every person who needs help will not receive help. Some may receive
nothing, some may receive a partial amount to provide some relief.
Even if an agency has money to pay salaries....it doesn't mean they can
guarantee employees. When unemployment is low......it is VERY DIFFICULT to
find those persons willing to work for minimum wage or slightly above. Their
own subsidy incomes may be jeopardized.
We are NOT ALONE as PD patients in this need....other organizations such as
Alzheimers, March of Dimes, MDA, Heart, Stroke, Cancer, Arthritis, Diabetes,
Blind, Deaf, Cystic Fibrosis,....all have the need for home health
care.....contact any of these organizations in your local area what their
clientele/agencies are doing in letter writing/visibility
campaigns....combined voices speak louder than individual whispers.
Rita Weeks
