The diagnosis of Williams syndrome can have financial and resource implications for your family. Depending on your child's medical status and developmental stage there will be a need for interventions, and many of these can be costly. However, there are public resources that may be available to you, depending on your specific circumstances. The Williams Syndrome Association has a Medical Treatment Assistance Fund and several scholarship programs which can help you provide enrichment and post-secondary educational programming for your child, as well as attend WSA conventions and conferences.
Review the topics below to see if any may apply to you.
- Medical insurance
- Early intervention programs
- Preschool programs
- Local Board of Developmental Disablities
- The Arc
- Medicaid waivers
- Additional programs
Medical insurance In many cases, especially with young (under school age) children, are usually covered by corporate insurance policies. You were probably made aware of Williams syndrome due to some other medical issue your child was experiencing. You medical costs should all be covered under your existing medical insurance, or Medicare if you don't have insurance and qualify for Medicare services.
But what about additional services like Physical, Occupational and Speech therapy? In many case these therapies may also be covered by your insurance as long as there is "medical necessity" and you have prescriptions for the therapies from your child's primary care physician.
Check the benefits plan summary for your insurance plan to see if services are covered.
NOTE: Speech therapy can sometimes be a unique issue for children under age 3. Most insurance coverages only provide speech therapy as a "restorative" therapy - meaning your child had to have already had the ability to speak and then lost it. However, some policies have provisions for small children which exempt them from this restriction. Check with your insurance carrier for details.
By law, public school districts that receive federal funds under the IDEA must provide early intervention programs for children under the age of 3. Per the law:
- "The Program for Infants and Toddlers with Disabilities (Part C of IDEA) is a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years, and their families. In order for a state to participate in the program it must assure that early intervention will be available to every eligible child and its family."
Check with your public school district to see what programs are available in your area.
By law, public school districts that receive federal funds under the IDEA must also provide preschool education programs for children with disabilities, ages 3 and up.
In the preschool program, your child will generally qualify for some level of additional services, such as Physical, Occupational and Speech therapy. However, this is dictated by your child's IEP - which you will need to develop along with the school for your child. You must create an IEP for each school year.
Check with your public school district to see what preschool programs are available in your area.
See the overview on creating IEPs here.
Most areas have a local Board of Developmental Disabilities that can help you locate local support and assistance. The availability of services varies greatly, so check with your local board for more information.
The Arc is the national organization of and for people with developmental disabilities and their families. It is devoted to promoting and improving support and services for people with developmental disabilities and their families. The association also fosters research and education regarding the prevention of developmental disabilities in infants and young children.
The ARC provides some suplemental financial aid to qualifying families of individuals with disabilities, including Williams syndrome.
Check The Arc website to find a local office in your area.
Families can apply for a Medicaid Waiver that waives the family income and only looks at the disabled person's income. This allows people who would otherwise be ineligible for Medicaid to receive needed medical care and stay at home rather than be institutionalized. Most states have some type of Medicaid waiver program (often called a Home and Community Based Waiver or the Katie Beckett Waiver).
Medicaid Waiver programs differ by state but can include those expenses previously listed as covered by Medicaid in addition to case management, personal care services, respite care services, adult day health services, homemaker/home health aide, habilitation, utility costs for medical equipment usage, and reimbursement for your private medical insurance premiums (called a HIPP - Health Insurance Premium Payment program).
The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) service is Medicaid's child health program for individuals under the age of 21. It requires that any medically necessary health care service be provided to an EPSDT recipient even if the service is not available under the state's Medicaid plan to the rest of the Medicaid population.
To find out more about Medicaid waiver programs, visit the following links:
- Listing of Medicaid, MR/DD, Deeming waiver, Tefra & other assistance programs
- State Regular waiver listing (pdf)
- State Model waivers listing
- Comprehensive Home & Community Based Waiver Database
Your particular state or county may have additional programs that provide financial assistance or pay for medical and therapy expenses.
Check with your local Department of Health and/or Department of Human Services.