Services in the United States for children and adults with a disability
Written April 30, 2019
by Caitlin Calder, mom to Della, who has Bainbridge-Ropers Syndrome
We spent years trying to navigate the federal and state services offered to children with disabilities in the US. We had to figure out waitlists, social security, Medicaid, grants, health care programs, early intervention, and special education services. I am hoping to help others avoid what we went through with our own child. I am speaking as a parent and as a future speech-language therapist (I graduate in May of 2019). I’ve had courses in special education law and received training in Medicaid funding and billing. I am going to try and provide other parents with the information guide I wish had existed when our daughter was born.
*I do not have information for the services offered in other countries. If you live outside of the United States and have some information on services available, please let us know so that we can create a more comprehensive international directory.
Early intervention
What is it? Part C of the Individuals with Disabilities Education Act (IDEA) mandates that early intervention services be made available to children birth to three years old. Each state funds its own program and costs to families are on a sliding scale but for most families, services are free.
Who qualifies? Children from birth to three years with a developmental delay in one or more developmental areas: cognition, physical, self-help skills, communication, and social/emotional. Each state has its own definition of developmental delay including how many areas of development are delayed and by how much. For example: 1.5 standard deviations below the mean on a developmental norm-referenced assessment; 30% deficit in two or more developmental areas.
What can they help me with? Early intervention programs create Individual Family Service Plan (IFSP) for each child that qualifies. Some of the services are offered in the child’s home include speech/occupational/physical therapy, skilled nursing, nutrition services, family counseling/training, audiology services, and assistive technology.
How do I get in contact with them? You can contact your state’s early intervention program through your pediatrician, by calling your nearest children’s hospital, or by searching for early intervention in your state.
Website: Here is a directory for each state: http://ectacenter.org/contact/ptccoord.asp
Special education
What is it? Individuals with Disabilities Education Act (IDEA) is a federal law mandating that children with disabilities receive access to general curriculum through accommodations.
Who qualifies? Children ages 3-21 years old who have a disability covered by IDEA.
What can they help me with? Children receive an Individualized Education Plan (IEP) which is a legal document providing individualized teaching and access to other key resources (like speech therapy, adaptive P.E., and extended school year services/summer school) at no cost to families.
How do I get in contact with them? If your child is already being served by your state’s early intervention program, then you will be guided through the transition process into your local school district before your child’s third birthday. If your child is not in early intervention, call your local school district’s special education department and ask for an evaluation for your child.
Here is an article explaining the special education qualification process in detail.
SSI/disability
What is it? Supplemental Security Income (SSI) is a federal program run by the US Social Security Administration. Monthly cash assistance is given to families that qualify.
Who qualifies? Must meet all of the following requirements: child under 18 with a documented disability (mental, physical, health related impairment that severely restricts activities of daily living), family has limited income/resources (you can add your child to a waitlist to wave the income portion to qualify, see Waitlists and Waivers below), and the child’s disability is expected to last 12 months or longer.
What can they help me with? Monthly checks to help cover the child’s health care costs not covered by insurance. Children who qualify for SSI also qualify for Medicaid (see Medicaid section below).
How do I get in contact with them? Online applications can be found on the Social Security Administration’s website.
Website: www.ssa.gov/benefits/disability/apply-child.html
*Tip: Many people are denied SSI benefits on their initial application process. Do not give up or start over! The appeals process is an effective way to prove your case. It may take two or three appeals, but it is effective
Medicaid
What is it? Medicaid is a US government funded health care service.
Who qualifies? Individuals with low income and individuals with disabilities.
What can they help me with? Medicaid covers acute care services (doctor visits, hospitalizations, surgeries, etc.), dental care, speech/physical/occupational therapy, in-home skilled nursing care, medical equipment/supplies (e.g. diapers, feeding tube supplies), and transportation to and from appointments.
How do I get in contact with them? Medicaid is administered by states, usually through Health and Human Services departments.
Website: (state by state directory) www.medicaid.gov/about-us/contact-us/contact-state-page.html
*Tip: If you do not qualify based on income, you can add your child to a waitlist that will wave the income restrictions. Please see Waitlists and Waivers below.
Home- and community-based services
What is it? home and community-based services are for people with disabilities or special health-care needs and the elderly in order to help them remain in their homes and in their community. Before the creation of these services, people with disabilities were often institutionalized.
Who qualifies? Medicaid beneficiaries
What can they help me with? Respite care, home access modifications (ramps, showers), nursing care, vehicle modifications (wheelchair lift), mental health care
How do I get in contact with them? There are currently waitlists in almost every state and some of them are up to 10 years long. Please see Waitlists and Wavers below for contact information.
Caregivers are an important part of our healthcare system. Respite is rest for the caregiver to allow them to be strong, refreshed and healthy enough to care for their loved on with health care needs.
+ http://archrespite.org The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs.
+ http://lotsahelpinghands.org Lotsa Helping Hands powers online caring communities that help restore health and balance to caregivers’ lives. Service brings together caregivers and volunteers during crisis.
Waitlists and waivers
What is it? Waitlists for waivers that will give Medicaid and and Home-Community Based Services based on a child’s disability regardless of family income.
Who qualifies: Anyone with a disability
What can they help me with? Respite care, home access modifications (ramps, showers), nursing care, vehicle modifications (wheelchair lift), doctor visits, hospitalizations, surgeries, , dental care, speech/physical/occupational therapy, in-home skilled nursing care, durable medical supplies (e.g. diapers, feeding tube supplies), and transportation to and from appointments.
How do I get in contact with them? Please stop what you are doing right now and go add your child to every waiver list your state offers. We waited 6.5 years to qualify and in some states the wait is up to 10 years.
State-by-state waiver waitlist directory: http://medicaidwaiver.org/
This is by no means a comprehensive list, but these services are a good place to start.
Medical disclaimer: This website does not provide medical advice. Our website contains general medical information about congenital ASXL mutations. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call 911.