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Financial Help for Children with Cerebral Palsy

Financial Help for Children with Cerebral Palsy

 

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.

The CP Family Network also offers Survival Guides that list government and private sector resources in each state for children with disabilities.

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

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.

Emergency Help

Some local affiliates of United Cerebral Palsy (UCP)  offer emergency money for living expenses and technological needs.

Technology Assistance

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.

More Resources

For other helpful information about resources for children with cerebral palsy, visit the Cerebral Palsy Family Network,

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6 Responses to “Financial Help for Children with Cerebral Palsy”

  1. Tracy Griffin says:

    my child was born with CP. She has Hemiplegia (left side affected). She is 6 yrs old. For the past 6 yrs her life has been continuous PT/OT. We are small business owners and we have never asked for or gotten any help with her therapy. We just borrowed $5000 from our parents to buy her a walk-aide. She has been wearing AFOs for 5 1/2 yrs. This walk aide was not covered by her insurance BCBS. So we are trying to find some assistance with her therapy and with payment for the walk aide. Can someone please send us in the right direction. We do have insurance for her but limited PT/OT for the year. People without insurance seem to be able to get all these things free. As a mother and father who spend endless hours with our business and 2nd jobs to help pay for costs for our daughter, there must be some form of help for us financially. I would appreciate any information or help you could give us. Thanks for your time in this important matter. Tracy Griffin

  2. Tom Phipps says:

    Tracy,

    I can certainly feel you pain in this situation, out daughter also has CP with Diplegia, we also have BCBS and are also running into problems with PT/OT. I am having to work extra jobs on top of my full time position to help with the cost, I don’t know if your aware but she just had the Selective Dorsal Rhizotomy and needs a lot of therapy for months on end, since we used up all of her PT we are trying to find out what else to do. If you have any more information about this please feel free to contact me.

    Thanks,
    Tom

  3. Sumani Osman says:

    I my premature born baby who is now six years was diagnosed to be suffering form CP at two years. The Doctor also diagnosed him as hydrocephalus and took him through and fiited him with a V-Shunt which said will darw excess water from the brain to allow brain dvelopment. Its been one and half years now and my still does not have balance, cannot sit, walk or talk. I live in Ghana with no services or any form of assistance for CP children. My child have done four years of physiotherapy with no results. I have struggling with my son in the past six years. I need any form of help and in particualar a walking aid.

  4. nereida says:

    I have a niece with CP and she currently very sick. She is 7.years old and has severe hypothermia. The doctors cannot do any more for her. Here brain is starting to shut down and the doctors basically sent her home to dye. Doctors gave her medication for the convulsions and other stuff but her insurance doesn’t pay for the heating blanket she needs. It’s too expensive for our family to purchase. I live in P.R. but she lives in Larencville,GA and between everyone in our family is trying to gather up some money so that we may be able to buy Keishly heating blankets, hats, sweaters, pampers, anything that will help give her a better quality of life until the Good Lord decides he needs her. All we are looking for is a little financial help and a big miracle for Keishly this christmas. I pray that somone out there can help this humble family. Thank you and have a Merry Christmas and a Happy New Year. God bless all.

  5. RUTTA,R.FRANCIS says:

    I am a father of a child aged 6 years. At the age of seven months after birth she was diognised to be suffering from CP. Doctors insisted on physio therapy as the only way to help her. One of the challenges I am facing is good facilities for her.

    I am a Tanzanian and I live here in Tanzania. Up to this moment i do not have any reliable work to meet some of her basic needs such as walking frames, learning facilities. I am sure if she had standard care she could be in a different stage (mental and physical). My wife and I have been strugling in different ways so that we help our own child.

    I will be very happy for any help/advice so that my daughter lives joyful.May God Bless you

  6. Kimberly Starling says:

    I am a physical therapist practicing in Texas. I recently helped a child I work with receive a grant through the elk’s lodge of Texas to buy a walkaide. The Elk’s Lodge fund raises to help children with special needs obtain necessary medical equipment that is otherwise not paid for through insurance. If you do not live in Texas, you may still contact your local Elk’s lodge to see if they do the same thing. Insurance and medicaid are providing less and less support to these children. Good luck with your searches.