Times have certainly changed when it comes to cerebral palsy care. In past decades, the high mortality rate for people with CP meant that doctors tailored their expertise toward pediatric medicine. Most cerebral palsy patients just didn’t live long enough to make long-term care relevant.
These days, however, nearly 90 percent of cerebral palsy patients reach adulthood. Advances in pediatric medicine have doctors struggling to keep up with CP patients as they move through adolescence into adulthood.
Adulthood brings new opportunities and also new challenges to people with cerebral palsy; it brings corresponding challenges to doctors to develop appropriate support that optimizes a patient’s ability to function and attain higher quality of life.
New York is fortunate to have a great wealth of resources for individuals with cerebral palsy and their families. Here are a few of the best ones from around the state:
The first of its kind on the East Coast, this care center housed in Columbia University Medical Center offers integrated, multidisciplinary care for children and adults with cerebral palsy. The Weinberg Center, as it’s known, brings in a comprehensive spectrum of faculty that specialize in all facets of cerebral palsy care: orthopaedics, cardiology, liver and kidney disorders, developmental medicine, kinesiology and movement disorders, regenerative medicine, nutrition and psychology, to name a few.
The staff at the Weinberg Center helps with transitioning patients with cerebral palsy from pediatric to adult care, as well as providing education and training for the medical community in working with CP patients. Their overall aim is to deliver support to people with cerebral palsy to help them maximize the potential to not only live, but thrive at any age.
Additionally, the Weinberg Center has established the first nationwide cerebral palsy patient registry. By collecting data on each individual cases of cerebral palsy, the registry will provide a tremendous boost to researchers of the disease. It will also allow specialists to compare their findings on the disease as they work with patients and, ideally, allow them to collaborate on solutions for specific challenges.
The center is named for its lead donors, Debby and Peter A. Weinberg. The Weinbergs invested heavily in this project of CUMC as a result of the help and support their son received from the hospital after being diagnosed with cerebral palsy at age 3.
“When our son began to transition from pediatric to adult care to manage his cerebral palsy,” Peter Weinberg says, “we realized that there is a vital need for adult specialized care to pick up where pediatric medicine leaves off.”
“Today,” adds Debby Weinberg, “our son is seventeen years old and a thriving junior in high school. But we know that there are many young children with cerebral palsy and now a large and growing adult cerebral palsy population, who find it difficult and overwhelming to access the medical system. We hope that the Weinberg Family Cerebral Palsy Center at Columbia will provide a ‘medical home’ for these patients and make it easier for them to obtain the highest quality medical care.”
This center serves individuals and families within the Finger Lakes community by creating opportunities that nurture individual potential in children and young adults with cerebral palsy. Founded in the late 1960s by Geneva-area parents, the center was envisioned as a place for community residents to foster equal opportunity and independence. After steady growth over the last three decades, the Happiness House has recently completed its most celebrated project: a 5,300-square-foot transitional residence equipped with eight efficiency apartments. It is a “one-of-a-kind,” non-certified transitional home to serve three young adults with disabilities and five adults with traumatic brain injury. Over the past 40 years, Happiness House has developed a reputation for leadership and innovation in developing exemplary programs — many of which have become models for statewide programs — that serve more than 1,100 children, adults and families in Ontario, Seneca, Wayne and Yates counties.
Also founded by local parents of children with cerebral palsy, this organization has been serving Chemung County since 1949. The small network of mutual support and dedication to finding educational resources grew into a premier provider of cerebral palsy care in New York state, offering clinical services, residential service and community support to individuals and families. Functioning as an agency for services available throughout the county, Able2 matches CP patients with specialists and programs from medical and therapeutic needs to family support and safety for individuals living on their own. The organization provides people with an individualized plan to increase opportunities (such as volunteering, recreation and community involvement) and build skills and relationships that connect them both within and outside of their peer group.
This organization has played a seminal role in CP-related support services. With quality of life for cerebral palsy patients as their cardinal goal, Enable offers clinical, education and community services throughout central New York, as well as a personal assistance program that allows participants to hire, train and supervise their own assistants.
True to its name, this service agency makes a priority of the ambitions and dreams of its community. Their stated mission is to help children and adults of physical and developmental disability live their lives to the fullest by providing individualized assistance based on personal choice. Committed to the development of innovative, individualized programs and integration of the developmentally disabled within the greater community, Aspire’s central program is called “School to Adult Life Transition.” Employing a multi-disciplinary team approach, the agency works with young adults to developed an individualized education plan building toward meaningful employment or continuing education and other aspects of independent living.
A telling note on Aspire’s legacy is reportage from its early days, in a 1949 article by the Buffalo Evening News:
“For the first time in their lives a group of young men and women are looking forward to a gay winter full of happy, interesting days. Accustomed to watching other boys and girls, these young people now are being offered a brand-new slice of living. They will go out at least one night a week for social recreation—go out wheelchairs and all. These young men and women are handicapped by cerebral palsy. (Statistics show that 95% of cerebral palsy happens at birth—so for nearly every member of this group it’s been a long time!)”
For a comprehensive list of New York’s great resources for cerebral palsy patients and their families, visit the Affiliates page of the Cerebral Palsy Associations of New York State website.
If you should need help with a case of personal injury, including hospital negligence or malpractice resulting in cerebral palsy, call the attorneys at Oshman & Mirisola at 800.400.8182 or fill out the form on the right side of this page.
Image Credit: Enable and Columbia University Medical Center