Cut Funding Leads to Less Support for Cerebral Palsy

Cerebral palsy is a complex neurological medical condition that affects the patient’s motor movement, muscle tone, and various other developmental factors. Each case of cerebral palsy is unique, and a person diagnosed may struggle with involuntary movements, cognitive impairment, intellectual disability, and anatomical abnormalities of the spine.

Management of cerebral palsy is interdisciplinary and involves both rehabilitative and medical intervention. People affected by CP may require surgery as well as physical, occupational, or speech therapy. These interventions foster independence through self-care, increased range of motion, and the use of assistive communication devices when necessary. People with cerebral palsy may also need assistive devices to ambulate, such as custom orthotics, canes, or walkers.

The costs of managing cerebral palsy can be burdensome on the patient’s family. Even with quality insurance, families may find themselves paying thousands of dollars out of pocket for appropriate care every year. For some middle-class families, these costs are not economically feasible. To help offset costs while receiving quality care, many families turn to non-profit help in the form of grants and free programs and initiatives.

The Leading Non-Profit for Cerebral Palsy Care

United Cerebral Palsy is one of the largest nonprofits in the United States, dedicated to serving children and adults with cerebral palsy through advocacy and other initiatives. The organization’s headquarters is in Washington, D.C. and it works tirelessly with the government to provide support and administer programs that assist families with a member who has cerebral palsy.

United Cerebral Palsy, or UCP, has over 100 local service providers that offer assistance to nearly 200,000 families located throughout the country who struggle with the negative effects of cerebral palsy. The UCP used to have an office in southern Illinois, but funding cuts forced it to close its doors in 2011.

The southern Illinois branch of United Cerebral Palsy remained in operation due to a $156,000 grant from the state. Unfortunately, the branch lost funding, and despite a robust effort from the community and the non-profit itself, it was forced to close its doors for good. The organization liquidated all of its furniture and left town, leaving its 300 families in the lurch.

Several other offices of the United Cerebral Palsy non-profit exist, including offices in Belleville, Oak Park, Decatur, and Land of Lincoln. However, these are not feasible commutes for those living in the south regions of the state. Other options include Shrewsbury, Missouri, but this too may prove to be too long a commute for any family, let alone one with a family member with special needs.

What Happens to Families in This Service Area?

Families often journey to the United Cerebral Palsy center after their first diagnosis of cerebral palsy, within the first couple months of a child’s life. Here, scared parents receive reassurance that intervention options are available, and for an affordable cost. Generally, the center helps families find the right equipment to improve ambulation, facilitates doctor referrals for insurance approval purposes, and serves as a case manager for people with cerebral palsy. Whenever a family has a question about a treatment, rehabilitation options, or insurance coverage, UCP is there. The non-profit can also assist with applications for other forms of assistance, such as social security disability and Medicaid.

Other Important Work UCP Does

In addition to raising money for families, providing guidance, and conducting its own research, UCP, as a whole, serves as an important advocate for families with special needs children. It was one of the main organizations that lobbied for (and was eventually successful in) passing the Americans With Disabilities Act of 1990. In the years since, it has also been responsible for leveraging technology and innovation to improve the quality of life in those affected by cerebral palsy.

Given the important work that the organization does, it’s natural to wonder what will happen if funding continues to dwindle. The UCP provides important, life-enhancing services to people with cerebral palsy living in the United States, Canada, and Australia. Without appropriate funding, families throughout the world could lose access to important services.

As families move further into their journey with cerebral palsy, they get better at navigating the systems in place on their own. The most vulnerable are those who do not yet have a diagnosis. Where will these parents go when they learn their child has a disability that will affect the rest of his or her life? This is the main concern of the organization.

Only time will tell which branches of the UCP will remain open and which will close due to cash flow issues. In the meantime, UCP is dedicated to helping families with children and adults living with cerebral palsy. For as long as they can, the organization plans on continuing their work of advocacy, research, and raising money for families affected by the condition.