Cerebral Palsy Community on Long Island Faces Changes

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Advancements in the treatment, diagnoses, and perception of patients with cerebral palsy has improved dramatically, experts say. (Getty Images)

Change tends not to occur suddenly, at least in the field of rehabilitative medicine. For those with cerebral palsy, change is gradual and not always easily obtained.

When documenting how much the treatment and diagnosis of CP has changed over time, what must not be discounted is the sea change in the public perception of this disability. 

“It’s been pretty dramatic,” says Dr. David Roye, executive director of the Weinberg Family Cerebral Palsy Center, who has been an attending physician for children and adults with CP since 1980. “When I first started seeing patients with CP as a resident, a fellow, and a young attendant, we still had residential homes … If you were a wheelchair ambulator and if they were having trouble taking care of you at school or at home, you would just go live in the hospital, which of course is not exactly ideal care.”

Around 800,000 children and adults have CP nationwide, according to the nonprofit Cerebral Palsy Alliance Research Foundation. The neurological disorder mainly affects tightness in the body’s musculature and is distinguished by its symptoms of spasticity, dyskinesia (uncontrolled movement), or poor balance.

Among advancements for those with CP is the improvement in the safety of medical professionals working within that most precious time frame: the first few hours of a person’s life. But delivering premature newborns comes with its own set of complications.

“As we become more advanced in terms of our technology, in terms of saving younger and younger premature babies, although we’re able to save their lives, they still end up with severe impairments,” says Dr. Patricia Tan of Baldwin Harbor-based All Care Physical Therapy, a near 30-year pediatric physiatrist specializing in treating children suffering from CP. “Because of this, we still see a lot of children with cerebral palsy. Having said that, what we’re doing now is improving their quality of life.”

Advanced surgical instruments now allow doctors to perform more daring surgeries on the spine. Improved treatment methods for neonatal patients sometimes result in less severe forms of the disability. For example, the use of intravenous magnesium sulfate treatments dampens the inflammatory response by the human body, preventing severe damage to the brain, which results in milder and milder forms of CP. 

Despite advancements in treating CP, financial stress is making providing services more difficult. New York State funding cuts have resulted in assistance being reduced at Roosevelt-based nonprofit CP Nassau, which provides vocational programs, school services, rehabilitation, and therapy. The agency increasingly has to turn to donors for help.

“Being in the field for over 40 years, I’ve seen things go from really bad to really good, then all of sudden a lot of these programs and a lot of these things that benefitted many people are gone because of lack of funding,” said CP Nassau staff member Maura Wachsberger. “Part of that is a problem because we’re always adapting to these horrible, negative changes and it looks like ‘Oh well, they get along without that, so it must be OK.’”

For example, as a result of cuts to CP Nassau’s Medicaid funding, the nonprofit had to eliminate prevocational classes, workshops, and weekly field trips that were offered in its vocational program, Life Options.

The cash crunch comes as the Empire State, which spends a third of its budget on Medicaid — more than $60 billion — tries to stem Medicaid spending overruns. Medicaid enrollment numbers for the blind and the disabled on Long Island are in the tens of thousands, with Nassau County calculated at 10,855 and the adjacent Suffolk County slightly higher, at 13,528

in 2013, according to the New York State Department of Health. The system is overwhelmed.

“If you have one entrance, and you have 50,000 people trying to get into it, it’s a logjam,” said Wendy Sheinberg, a seasoned elder law attorney and disability advocate on Long Island.

While there’s more work to be done, the improved treatment, prognosis, and perception help.

“I think that the understanding of people’s disabilities, and the fact that a disability is simply a diagnosis and not a definition, is going to continue to improve,” Sheinberg said. “It’s changing, but we’re just not there yet.”

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