This past Saturday ICS, the Rusk Institute and the New York City chapter of the National Spinal Cord Injury Association sponsored From Injury to Independence: A Spinal Cord Injury Symposium. It was a full day of thought-provoking presentations on all aspects of spinal cord injury, with a special focus on the road people with SCI travel to regain their independence.
Just after 9:00 a.m., Geoffrey Hall of the Rusk Institute welcomed several dozen attendees: occupational and physical therapists, people with disabilities and ICS staff. Throughout the day we heard from experts on a range of topics including physical health, medical research, employment and home modifications.
Health and Wellbeing
Nora Sammon, a wound care nurse from Weill-Cornell Medical Center, gave an overview of pressure sore prevention and wound care. Pressure ulcers are one of the most common and worrying secondary conditions following an SCI. Because people with SCI don’t feel their skin below the level of injury, they are at risk of sitting in positions, especially over bones, long enough for the skin to begin to break down from inside. “Wounds never heal to 100 percent,” Sammon said. “At best, they can heal to 80 percent.”
Sammon said that pressure ulcers, which can cost up to $70,000 per wound to treat, take a $9.1 to $11.6 billion bite out of the economy annually. With treatment that can include weeks of rest on special air mattresses, pressure ulcers can be extremely costly to a person’s independence, as well. On a hopeful note, the possibility of preventing wounds with neuroprostheses, which can warn a person with SCI of dangerous pressure on the skin, was discussed during an afternoon session.
Before that, though, came a lively discussion by Lawrence Harding, PT, and Rusk’s Maneshka Perrera, OT, of “spinal mobility fitness,” a technique Harding has developed to improve range of motion for adults with SCI. Harding, a professor at Hunter College who collaborates with the Axis Project, noted that though he doesn’t work with teens or younger folk, he has taught his method to people 70 and older.
Perera explained that Harding’s model combines two competing views of rehab, the restorative model, which aims to help the client regain movement lost after injury, and the compensatory model, which focuses on finding new ways of moving to replace those lost after injury. Harding helps clients find their “neurological center of control” by working on a few basic movements of the upper body. The object, he said, is to “teach people to feel their back.”
Eli Ramos and Manny De La Cruz, both ICS members with cervical level injuries, demonstrated some of Harding’s techniques, using straps and exercise balls. Strapped alternately to Perera and Harding, perched on a padded table, De La Cruz flexed his elbows, sit-up style, pivoting from his back to extend his range of motion. During a question and answer period, he praised Harding’s techniques, saying, “Once I learned how to lock down in my chair, my whole world changed.”
For his part, Harding is eagerly following a Columbia University study of the efficacy of the method, confident that the results he sees with his eyes will be confirmed by the hard data.
Turning to the social implications of SCI, ICS Senior VP for Independent Living Services Anna Fay and Senior VP for Advocacy and the Women’s Health Project Marilyn Saviola, along with Alex Elegudin of Wheeling Forward, held a panel on the sometimes awkward intersection of benefits and employment.
“How do people define themselves?” Saviola asked and answered her own question, “Through work.” Citing herself as an example of a person who defies the common notion that disability equals unemployment, she acknowledged that working with a disability requires finding an intricate balance between benefits and income. “Very few people know how to do this right,” she said.
The rules don’t make it easy. It’s difficult to live on disability benefits without a supplemental income, but if you earn too much of an income, you can risk losing your benefits. On top of this Catch-22, SCI is very expensive, not only because of the high cost of health care but also the costs of adaptive and assistive technologies and, most expensive of all, home care. There are options, Saviola said, perhaps most promisingly the individual or pooled trust, which enables a person earning more than Medicaid allows to put their surplus funds in an account operated by a third party that can be used to pay expenses like rent, credit cards, and utilities.
Fay discussed the advantages of Consumer Directed Personal Assistance Services (CDPAS), a program designed for and by people with disabilities to give them control over the hiring, training and firing of their personal aides, paid for by Medicaid. Without CDPAS, a person with SCI would most likely have to rely on a home health agency to pick their aides, which leaves a lot of this sensitive relationship to chance. CDPAS enables a person to hire anyone they feel comfortable with—even relatives, other than parents or spouses, as long as they don’t live with the client.
A further advantage: aides hired by CDPAS are exempt from the Nurse Practice Act, which otherwise requires a licensed nurse to administer the home care client’s pills or change wound dressings, among other simple medical tasks. Elegudin, who uses CDPAS, said it’s not absolutely fool proof—he has spent entire days in bed because his aide was sick—but he thinks it beats the alternative. “I know best how to help me,” he said.
Several themes carried through presentations on assistive technologies in the afternoon, including the high cost of assistive technologies and the reluctance of third parties to pay for them—a fact that undermines independence. Also discussed was the uniqueness of each SCI. Discussing modifications of entryways, bathrooms and kitchens in the home, occupational therapist Megan Rochford from Rusk said, “I follow the ADA [Americans with Disabilities Act] guidelines, then I tweak them for the client.”
One of the most thought-provoking presentations came toward the end of the day, from ICS Senior VP for Rehabilitation and Training Jean Minkel, in a talk, she titled “When Walking Fails.”
“What’s the first question you get asked in rehab?” Minkel asked the therapists in the room.
“When will I walk again?” someone volunteered.
Minkel nodded and said, “It’s not an easy question, is it?”
Minkel said there is a tendency in the rehabilitation world to avoid the hard reality that most people with severe SCI will not walk again. This can complicate the mission of rehabilitation, which is to enable people with SCI to rebuild their lives and regain their independence. Minkel said the wheelchair to a newly injured person represents disability. It takes time before he sees its liberating potential.
Citing research from Dalhousie University in Canada, Minkel said that most people with SCI, even those injured longer than a year, are not well-versed in manual wheelchair use. “We should be teaching them wheelies,” she said.
A Tale of Independence
Minkel told a story of an ICS member who lived in a housing project in the middle of a big hill. She asked him why he was always hanging in his building lobby. Why wasn’t he out in the neighborhood, doing things, visiting friends? He said if he went down the hill, he’d have to push too hard to get back up home. To go up the hill was too tiring, even if it was much easier to come back down. Why didn’t he get a power wheelchair to make it easier to go uphill, Minkel asked. He demurred, saying, “Power chairs are for disabled people.”
Minkel made him a deal: He could try the power chair for a month, no strings attached. If he didn’t like it, she would take it back. Before the month was up, he called her and asked, “You’re not going to take the chair away, are you?”
The member may have to have been led part of the way, but he found his own road to independence.