By Kelly McLaughlin
Money questions can quickly rise to the top of the list of parents’ concerns after they learn their child has cerebral palsy. Who is going to pay for all the services the child will need, such as doctors, surgeons, physical therapists, occupational therapists, speech pathologists, home health nurses and equipment? What about lost income to stay home with a child?
Fortunately, children with cerebral palsy are easily eligible for a number of government programs that help pay for services.
Unfortunately, parents with a newborn with medical issues may not be in the best position, mentally or emotionally, to start slogging through a paperwork maze. This is where calling on a relative or close friend to help may be a parent’s first and most important act. Providing this kind of “financial aid” can consist of getting recommendations from the pediatrician’s office, noting down names and phone numbers, and collecting all important documents in one place, such as the CP Family Network’s Care Guide: Medical and Emergency Records.
First Step is To Get a Diagnosis in Writing
To get started, you must have a written diagnosis of your child’s condition that qualifies him or her for financial assistance. Ask the hospital’s social services department or your child’s pediatrician for guidance if you have any questions in this area. Support services other than financial aid will need further documentation from doctors saying the services are a “medical necessity” before they can be applied for.
Contact Social Security
Your next step is to contact Social Security to determine your child’s eligibility to receive Supplemental Security Income. You will need to do this in person at your local Social Security office. Call them toll free at 1-800-772-1213 for a location near you.
Supplemental Security Income (SSI)
SSI is designed to help people with life-long disabilities. A waiting period to review paperwork is waived for children with a diagnosis of cerebral palsy. This program provides monthly cash payments to help pay for in-home care of a child. The amount is based on household income, as determined by a formula developed by each state.
When applying for SSI payments for your child, take his or her birth certificate and Social Security number with you. (Many people order a SSN for their child when they fill out the paperwork for the birth certificate. If not, take the birth certificate to the Social Security office and apply. Other documents you may need are a copy of your child’s hospital records showing his/her diagnosis, contact information for doctor and hospital, and your last tax return showing income.
A Social Security counselor should be able to help you figure out what your SSI payments will be, based on your financial situation.
Help for New Moms
New mothers who need to take time off from work to care for their child may be eligible for payments of up to 60% of their standard salary by applying for Temporary Disability Insurance through their state. This usually is available for up to 12 months.
Medicaid is a healthcare program for people with low income and limited resources. In most states, children who get SSI payments qualify for Medicaid. In many states, Medicaid comes automatically with SSI eligibility. In other states, you must sign up for it. And some children can get Medicaid coverage even if they do not qualify for SSI. Check with your local Social Security office, your state Medicaid agency, or your state or county social services office for more information.
The Medicaid Reference Desk is a resource for people with intellectual disabilities and their families to learn about Medicaid and other public benefits, services and supports.
Other HealthCare Services
A child who receives SSI is also eligible for other services under the Children with Special Health Care Needs provision of the Social Security Act. These programs are usually managed by state health agencies and go by different names. These programs provide services through clinics, private offices, hospital-based outpatient and inpatient treatment centers, or community agencies.
Even if your child does not get SSI, these programs may be able to help. The National Dissemination Center for Children with Disabilities provides state-by-state directories of agencies that provide services to children with cerebral palsy.
Birth to Age Three
Infants and toddlers with disabilities are eligible for a variety of free services through the federal Individuals with Disabilities Education Act (IDEA). Services for very young children, from birth to the third birthday (and sometimes beyond), are called Early Intervention or Part C services (so named for where they are described in IDEA).
Children Age Three and Up
Once a child reaches pre-school age, he is eligible for free services through the local school district. Call your local elementary school for assistance. Also, the NICHCY website provides a directory of state agencies.
Some local affiliates of United Cerebral Palsy (UCP) offer emergency money for living expenses and technological needs.
UCP offers money to pay for assistive technology equipment through the Bellows Fund. Individuals must apply through their local UCP affiliate, which submits the applications to the national office.
Some states and lending institutions offer low interest loans to buy assistive equipment or home modifications. USA Tech Guide, a program of the United Spinal Association, provides a directory of loan programs.
Housing Help for Young Adults
Later in life, as the child with this disability grows into an adult, he or she may decide to live on their own. Through Section 8 HUD, patients with this disability can get housing assistance vouchers and reduced rent based on their income and demonstrated need. Through the Krysti Bingham Cerebral Palsy Foundation, eligible residents will only pay 30% of their living expenses, with the rest funded through a government grant.
For other helpful information about resources for children with cerebral palsy, visit the Cerebral Palsy Family Network,