A Crowning Effort

Kristen McCosh is energetic, talented and well-accomplished. McCosh is a novelist — she is writing a series of books featuring women with disabilities as heroines — and she a consultant with the Early Intervention Program for newly injured spinal cord injury patients at Spaulding Rehabilitation Hospital in Boston.

She is also editor-in-chief of Solutions, an e-magazine, and is working toward receiving her master’s degree in public health at Boston University. But her primary focus is advocating for those with disabilities.

McCosh, who serves as Ms. Wheelchair America 2008, “talks the talk” through her MWA platforms, which include leading by example, the importance of peer mentoring, physical fitness for people with disabilities, employment opportunities for people with disabilities — and support for home care services.

Ms. Wheelchair America, which was founded in 1972, provides an opportunity for women who use wheelchairs to educate and advocate for the more than 52 million Americans living with disabilities. Currently, there are 24 states that have held or will hold pageants for the 2009 title. Women in states without pageants who want to participate can enter as independent delegates.

McCosh, who at age 15 had a diving accident in which she sustained a C6 spinal cord injury, is passionate about the independence that can be attained through mobility equipment, employment opportunities and community involvement for those with disabilities.

She believes access to home medical and mobility equipment is essential for people with disabilities and is striving to ensure it is enhanced — not decreased.

“My primary legislative concern is to increase funding to keep people at home,” she says. “How disheartening can it be to be 20 years old and sitting in a nursing home because you can’t get a wheelchair?”

Her relationship with her mobility provider is a special one, she says. That’s why competitive bidding concerns her: It takes the control out of the patient’s hands.

“When considering all of the cutbacks and the concerns of the HME industry, I think about my experience. I have had the same home care provider since my injury 25 years ago. The company has changed hands a few times, but I have the same technician who works on my wheelchair and the same person who fits me for my wheelchair. It is a real provider relationship. It’s not like picking out a car,” she says.

The bond created between providers and patients is strong.

“If we can keep those bonds established, it keeps people healthy. When you are switching around to different providers in any aspect of your care, things get missed and things fall through the system. It can be detrimental to your overall health,” she says.

Not surprisingly, McCosh has taken advantage of her Ms. Wheelchair America position to encourage others.

“I have been able to reach so many people and talk to them about my message and, hopefully by seeing me, they see they can have hope for another life when they get out of the hospital,” she says.

Her title, she recognizes, also affords her the opportunity to deliver a message on the importance of home care.

“The fact that I am a leader in the national disability community allows me to talk about these issues all of the time,” explains McCosh. “Home care — in every way — is one of my platforms. This includes equipment, personal care assistants or employment programs that keep people viable citizens who can work and support themselves so they do not have to go to a skilled nursing facility.”

McCosh acknowledges that those with disabilities should get involved, and she urges HME and rehab providers to reinforce the point.

“Providers should get involved with leaders in the disability community who can spread this message to people with disabilities and to legislators. It is a huge way to make an impact,” she says.

“Talk with your patients to spread the message so it can become a symbiotic relationship.”

She adds this might be difficult as “not everybody in a wheelchair is empowered.

“Many do not have confidence and are not empowered … but when you get people who are settled in the situation and ready to do some advocacy, those are the people who can really make a difference,” she explains. “When congressmen see people who are in this position and listen to their stories, there is opportunity to make a difference.”

Continues McCosh, “I want to raise awareness that someone with a disability is just like anyone else. They want opportunities to work, to go to school, to be out in the community and to get married and have kids,” she says.

She offers this advice to those working in HME : “Keep up the fight. I don’t mean to be trite, but nothing worthwhile ever comes easy. We need to raise awareness in Congress.”

When McCosh’s reign ends, she plans to continue working on the issues that matter most to her.

“I plan on doing outreach and continuing being an advocate for the rest of my life, because disability is my life,” she says. “Not only am I trying to improve my own circumstances, but if I can make it easier for someone who comes after me, then I have really had a positive impact.”