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From the issue dated ENTRY
LEVEL Paralyzing Fall Sets Woman on Quest to
Help Others Get Better Care I have no memory of the fall that nearly took my life,
left me unable to walk -- and ultimately set me on a path to leading an
organization dedicated to giving people with disabilities more control over
their care and their lives. It happened in 1984, about three
weeks before my high-school graduation in I received my high-school diploma in the intensive-care
unit. For several weeks, I could only breathe with the help of a respirator.
The doctors told me I'd have to use a wheelchair for the rest of my life. My
reaction to this devastating news? For three years I did little more than
hang out with friends. I lacked any hope or aspirations for my future. As time passed, though, I started suffering chronic pain
and found it increasingly difficult to get the services I needed in the area
where I was living. I decided to move to the I'd never been much of a student, but I quickly realized
that the only path to empowerment and a fulfilling life would be through
education. By 1995, I was pursuing my master's degree, when I heard of a job
opening to help develop a program that would offer people with disabilities
more autonomy and choices in regards to their care. What I soon learned about what was called
consumer-directed care, and it proved to be a turning point in my life.
Instead of the traditional model of a home nurse directing the care and
assistance to the disabled individual, the consumer-directed model allows the
client to call the shots. The concept fit well with my views. I had been
forever challenging the decisions made by my caregivers and caseworkers. I
was a rebel. Now I finally had a cause. Unfortunately, only a few months after I got that job,
financial problems with the organization forced the layoff of me and several
other employees. But even though I was out of a formal job, I was deeply
committed to the concept of consumer-directed care. I knew firsthand the
difference it could make. And I vowed that I would do whatever it took to
offer those services to people with disabilities in the I continued to volunteer for the organization where I had
previously worked while I started laying the groundwork to start what wouldbecome Consumer Directed Choices.I
connected with Edward Litcher,who
was one of the pioneers of theconsumer-directed-care
movement that had begun years before in While pursuing my master's degree, I used every spare
minute to making Consumer Directed Choices become a reality. I applied for
nonprofit status and found a suitable location to hang our shingle. I tended
to hundreds of details, from securing liability insurance to developing a pay
scale for employees. Yet, the most daunting challenge I faced involved money.
Plenty of aid and grant programs were available to for-profit enterprises,
but the funding options for nonprofit organizations seemed limited. Finally,
I managed to get an unsecured loan for $60,000 from the Capital District
Community Loan Fund. My boyfriend at the time and I also took out additional
loans for $80,000. It was a huge risk to take, but I had such faith in the
concept that we signed on the bottom line. Finally, on We recently moved into larger offices and now have an
administrative staff of 12 employees. We currently serve about 275 clients
with 500 personal assistants. We pay the assistants' salaries and also
provide them with a range of benefits. In my view, the consumer-directed option is a step toward
resolving the financial crunch facing Medicaid, because the administrative
costs are reduced when there is not a heavy bureaucracy between the client
and the professionals providing care. And beyond that, it just makes good
sense. In the traditional model of home care, an agency might say, we can
have a home-care nurse come by at Much of the feedback I've received over the last several
years has made all the time and effort I put into this worthwhile. Many of
our clients are experiencing for the first time the liberation that comes
with directing your own care. And many of the personal assistants say they
find the work more satisfying than the often regimented and institutional
approach of the past. Our big challenge now is to continue to grow but not
morph into the bureaucracies that motivated us to start this in the first
place. For me, I'm frankly amazed when I think about what I've
created. As I reflect on how far I've come, I think the key was simply taking
care of what needed to be done each hour of each day. Over time that has led
to something that for me is a source of great pride. What began as a tragedy
more than 20 years ago ended up launching a journey that has allowed me to
help others facing many of the same challenges I deal with every day. -- As
told to Scott Westcott |
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