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

CONSTANCE LAYMON Age: 39 First professional job: Coordinator of consumer-directed personal-assistance program, Capital District Center for Independence, Albany, N.Y. Current Job: Chief executive officer, Consumer Directed Choices, Albany

weeks before my high-school graduation in Cooperstown, N.Y. A group of us seniors were having a party in the woods. It was nearing midnight when one of my friends started chasing me around. I bolted away from him — and straight off a cliff. I fell more than 100 feet, dislocating several vertebrae and severing my spinal cord.

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 Albany region, which offered more transportation options and better access to home care. The move also gave me a new perspective: I finally started thinking seriously about what I should do with my life. In 1989, I enrolled in Schenectady County Community College.

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 Albany region.

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 New York. He advised me on the importance of balancing the desire for autonomy with necessary bureaucracy to get a successful nonprofit organization off the ground.

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 December 29, 2001, we started providing services to two counties in the region. Within the next few months we were serving four counties. Our program is built around a simple model: County caseworkers evaluate disabled clients to determine if they are willing and capable of directing their own care. If so, the county sends us a referral, and it is then the responsibility of the client to choose a personal assistant. We handle the administrative tasks involved with the agreement, including billing Medicaid. In our first year, our total revenue generated through billing Medicaid for the services provided was $1.3-million. The second year, our total revenues were $3.5-million. The third year we hit $6.4-million.

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 8:30 p.m. to help you get into bed. Well, who wants to go to bed every night at that hour? Under consumer-directed care, a client can hire someone willing to adapt to his or her schedule and lifestyle.

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.