Children with developmental differences often need extra services to support their physical health and mental well-being. But researching and connecting with specialists and other service providers can sometimes feel like a full-time job for parents and caregivers.
This guide is intended to make that job a little easier. The resources below may help you locate health professionals, special services, and sources of funding to cover the costs.
An accurate diagnosis and effective, multimodal treatment plan are important for everyone with a developmental difference or disability. Here are some tried-and-true ways to find healthcare services for a child.
Connect with national organizations
One of the most effective ways to find services is through organizations dedicated to specific conditions.
- American Speech-Language-Hearing Association. This national organization offers a list of professional hearing loss organizations, many of which offer provider directories.
- Autistic Self Advocacy Network. This public policy advocacy group develops autistic cultural activities; offers leadership training for autistic self-advocates; and provides information about autism, disability rights, and systems.
- Child Neurology Foundation. The organization maintains an updated list of clinical trials aimed at pediatric neurological conditions.
- Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD). The organization maintains a list of specialty clinics around the country.
- Children’s Tumor Foundation. This foundation that focuses on research and awareness of neurofibromatosis maintains a directory of doctors as well as a tissue biobank.
- Cystic Fibrosis Foundation. The organization funds 130 cystic fibrosis care centers across the nation, and also offers a clinical trial finder service.
- Family Connect. Family Connect serves parents and caregivers of children with visual impairments. It has a directory of services by state.
- Fragile X Foundation. The Fragile X Clinical & Research Consortium offers an interactive map and links to help you locate clinics nationally and internationally.
- Muscular Dystrophy Association. This national organization allows you to search for muscular dystrophy care centers and affiliates near you.
- National Down Syndrome Society. The society offers a Down syndrome clinical database.
- National Organization on Fetal Alcohol Syndrome (NOFAS). NOFAS provides a state-by-state resource directory.
- National Organization for Rare Disorders. This organization offers a directory of patient organizations that may be able to direct you to specialists.
- Spina Bifida Association. Use the interactive map or consult the directory to find specialist clinics and providers.
- Tourette Association of America. The association has a specialist directory along with a list of Centers of Excellence.
Search for specialists
If you need a health professional who specializes in treating a certain condition, try these listings:
- American Academy of Pediatric Dentistry and the American Board of Pediatric Dentistry. These organizations can help you locate a specialist when a disability affects your child’s oral health.
- American Academy of Pediatrics (AAP). At the AAP’s consumer website, you can search for pediatricians and pediatric specialists.
- American Association for Pediatric Ophthalmology and Strabismus. This organization has a referral database for doctors treating eye disorders in children.
- American Physical Therapy Association (APTA). The APTA’s subspecialty group, the Academy of Pediatric Physical Therapy, hosts tools to help you locate pediatric physical therapists and board-certified clinical specialists.
- MedlinePlus. This U.S. government site offers links to specialist directories.
- Society for Developmental and Behavioral Pediatrics (SDBP). Type your state into the search tool to find clinicians in your area.
Under the Individuals with Disabilities Education Act (IDEA), your child may be eligible to receive educational and therapeutic services through the school district. Part B of IDEA governs services for school aged children, while Part C governs early intervention services for babies and toddlers from birth to 36 months old.
These organizations can help you understand your child’s rights and your rights, plus how to advocate for your child in meetings with the school:
- Center for Parent Information & Resources. Nationwide Parent Training and Information Centers provide workshops, webinars, and assistance to parents and caregivers on how to advocate for children in schools, including in IEP and 504 meetings.
- U.S. Department of Education. Your state’s Part B and Part C coordinators and their contact information is available on the Department of Education’s website.
- Wrightslaw. This legal advocacy group offers a Yellow Pages for Kids directory that allows you to search for trained advocates who can guide you through the special education process and even attend parent meetings with you.
Children with developmental differences are protected by the law. In addition to IDEA, the Americans with Disabilities Act (ADA), the Affordable Care Act (ACA), and many other state and local laws were enacted to make sure children have access to safe, affordable, and equitable healthcare and education services.
If you need to know more about your rights and your children’s rights, you may want to contact one of the organizations below.
- Council of Parent Attorneys and Advocates. This advocacy organization litigates to protect disability rights and provides a search tool for locating lawyers who specialize in disability laws.
- Disability Rights Legal Center. This organization provides free legal help to people who are experiencing discrimination because of a disability.
- Learning Rights Law Center. This firm advises and represents families with autistic children.
- National Autism Law Center (NALC). The NALC litigates cases that support the legal rights of autistic people.
- National Disability Rights Network (NDRN). With agencies in every state and territory, the NDRN is the largest legal advocacy organization serving people with disabilities in the U.S.
- Special Needs Alliance. These attorneys specialize in planning for the future for special needs children.
- Wrightslaw. Attorneys, advocates, and authors Pam and Pete Wright offer videos, books, and training webinars to help parents and caregivers understand disability rights.
Families and caregivers can spend thousands each year caring for children with developmental disabilities and differences. Below, you’ll find some resources to help defray expenses.
These organizations offer scholarships and grants in varying amounts. Some may be limited to residents of certain geographical areas.
- Autism Care Today (ACT!). You can apply for SOS grants of up to $5,000 to help pay for autism care.
- Cerner Charitable Foundation. The foundation funds grants for medical procedures, assistive devices, vehicle modifications, and treatment-related travel expenses for children with disabilities.
- Friends of Disabled Adults and Children (FODAC). This organization supplies durable medical equipment and wheelchairs to people who need them.
- Giving Angels Foundation. This organization awards one-time $500 grants to help children with physical disabilities and illnesses obtain care.
- The Autism Community in Action (TACA). In some regions, the organization offers scholarships to help families pay for biomedical care and immunity support.
- United Healthcare Children’s Foundation. United Healthcare offers grants of up to $5,000 to pay for medical care that isn’t fully covered by an insurance plan.
- Wheelchairs 4 Kids. If your child needs a wheelchair, or if you need to modify your home or vehicle to make them wheelchair-accessible,this organization can help.
- Wheel to Walk Foundation. The organization supplies mobility assistive devices to children with disabilities.
The U.S. government offers financial assistance and health coverage to eligible families through several agencies. Many state and local governments also have financial assistance programs and health benefits.
Social Security benefits
Children with a developmental difference that is disabling may qualify for monthly payments from the Social Security Administration. To qualify, your child must earn less than $1,304 every month in 2021. The monthly limit for a child who is blind is $2,190 in 2021.
Some of the conditions that usually qualify for Supplementary Security Income (SSI) benefits include:
- total blindness or deafness
- muscular dystrophy
- cerebral palsy
- Down syndrome
- symptomatic HIV
- severe intellectual disability in a child 4 or older
- birth weight below 2 pounds 10 ounces
To apply for SSI benefits for your child, you can call 1-800-772-1213 or visit the Social Security office in the area where you live.
SSDI or SSI? How can I tell them apart?
Social Security Disability Insurance (SSDI) benefits are related to your work history. Supplemental Security Income (SSI) is based on your income level and assets. Generally, SSI benefits assist those with lower income, or who haven’t worked long enough to qualify for SSDI.
If your child is eligible for SSI benefits, they may be enrolled in Medicaid automatically. Even if your income isn’t within your state’s Medicaid limits, there are other pathways to Medicaid coverage, including waiver programs that lower or eliminate qualifying income limits. To apply for coverage, contact your state’s Medicaid office.
TheMedicaid benefit package covers a wide range of services and supports to make it easier for children to live at home with their families. Many of these services aren’t fully covered by private health insurance plans. Here’s a brief rundown of the services typically covered:
- doctor visits
- lab tests
- regular vision, hearing, and dental screenings
- physical therapy
- occupational therapy
- speech therapy
- behavioral health services
- medical equipment
Depending on the severity of the condition, Medicaid may also offer long-term support services such as nursing care, assistive technology, and case management by a social worker to help coordinate care.
Children under 18 can qualify for Medicare Part A, Part B, and Part D if they have end-stage renal disease. Young adults between 20 and 22 with developmental disabilities may qualify for Medicare if they’ve been receiving SSDI benefits for 24 months.
If your child developed a disability before age 18, is not married, and has at least one parent drawing Social Security retirement benefits, they can qualify for Medicare even if they don’t have any work history.
Child Health Insurance Program (CHIP)
The CHIP program offers lower-cost health insurance for people whose income is too high to qualify for Medicaid coverage but not high enough to be able to afford private health insurance. Like Medicaid, CHIP is a program run by both federal and state governments.
These national organizations offer a wide array of services. They’re a good starting point when you’re looking for providers, services, and assistance.
- Child Welfare Information Gateway. This hub provides lots of resources to families, including a list the behavioral and wellness agency in each state.
- National Association of Free & Charitable Clinics. Type your location into the search engine to find clinics in your area.
- National Association of Councils on State Developmental Disabilities. Each state has a department, council, commission, or agency that provides resources to families and children with developmental disabilities.
- Parent Training and Information Centers and Community Parent Resource Centers. These centers, located in every state and territory, offer education, support networks, and many other services.
If you are the parent or caregiver looking after the health and well-being of a child with a developmental disability, you’re not alone. You can find support, services, and evidence-based treatments to help your child thrive.
Though services can be costly, assistance programs, grants, and scholarships offered by public and private organizations may make it easier to provide the services your child needs.