This is an article that just came out in Directions magazine, which is the Official Publication of the National Registry of Rehabilitation Technology Suppliers. We are all working together on Capitol Hill to get a bill passed that would allow for the people who need to use Complex Rehabilitation Technology (wheelchairs and power chairs), to get the piece of equipment they need, specifically fitted to them, as a separate category within the Medicare system. Right now, this highly specialized technology is being thrown together with walkers and scooters and canes and other off the shelf medical equipment. This makes it extremely difficult for people who require Complex Rehabilitation Technology for daily use and well-being, to get what they need.
Here is the article:
CONSUMER ADVOCATES SPEAK OUT TO AFFECT CHANGE
Molly Hale
Molly Hale sits cross-legged on a platform
in her home that is covered by a sheepskin rug. She designed the 6-foot by
12-foot pod, as she calls it, as a place where she could stretch out and
exercise without having to power lift herself up off of the floor. Here, she
also records podcasts to answer questions submitted through the nonprofit
organization, Ability Productions, which Hale and her husband, Jeramy Hale, established.
Podcasts are just one of the many resources offered to reach their goal of
individuals improve health and well-being after a spinal cord injury.
Hale is an architect by trade
having worked in the industry since 1981; and although her designs have always
featured universal elements – wider doors and hallways, easy access from
outdoor to inside – becoming a quadriplegic in 1995 shifted her focus. The
Hales both are design consultants for building accessible structures and often
speak at conferences. She also mentors engineering students from nearby
Stanford University.
Almost 18 years ago, Hale fell
asleep at the wheel while driving home from a martial arts camp. Her three
passengers, one of whom was her daughter, escaped with minor bumps and bruises;
Hale had to be cut out of the car after it rolled across four lanes of traffic
coming to a stop upside down crushing the driver’s side roof.
Hale suffered a spinal cord injury
at the c5-6 level; doctors told her she would never move voluntarily from her
shoulders down. She defied the prognosis, however, and has almost full use of
her arms and hands and can almost walk the length of a football field with
support. She credits most of her abilities to having access to the Betty Wright
Swim Center in Palo Alto, which is only 5 miles from her home.
In the water, Hale says, there is
freedom of movement that cannot be accomplished on land. She spends about 9 to
15 hours a week at the center’s indoor warm water pool where she practices
water walking, a therapy that Hale says has progressed her ability to walk on
land. She also volunteers as a staff member, helping others during classes so
the instructors can provide more one-on-one with new clients.
Hale also is working with a local
group to get the swim center’s 40-year-old pool replaced. Knowing Hale, it
won’t be long before they accomplish their goal. After all, she convinced
therapists at Stanford University hospital to give her and other adults access
to equine assisted therapy that was proven successful with children. After multiple
requests through letters and multiple negative responses, the therapy was
approved. “I don’t know if they said yes so I would stop bugging them or what,”
Hale said. “It doesn’t really matter; what’s important is the access to the
therapy. Regaining the ability to stand and then take steps has completely
altered my world again.”
No stranger to CELA, the Hales will
return this year for their fourth conference, hoping to continue educating
legislators about the importance of having a separate benefit category for
complex rehab technology. “It’s critical
that we, the end users, show up; otherwise it looks like those in the industry
are just looking to make a buck and it’s so much bigger than that.
“We were there in the beginning
when there was not even a bill,” Hale said. “To be a part of the groundbreaking
and then to go back and see the progress is like having a child; we have to
keep growing it by giving more information and knowledge. We have gotten to see
people become passionate about this bill and eventually we’ll see it signed,
sealed and delivered.”