American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)Know Your Rights

It is important to understand that people with disabilities have rights, which vary by country.  In the United States, the Americans with Disabilities Act forbids discrimination against people with disabilities in various contexts and is enforced by the US. Department of Justice.  Anyone can make a complaint for an ADA violation here.

Because of the Olmstead vs LC Supreme Court Decision, people with disabilities generally have a right to reside in home and community settings instead of institutional care if they so choose.  Nevertheless, many people with disabilities face significant barriers to adequate home and community-based services.  Providers can advocate for their patients to get needed services, such as those provided by waiver programs, which vary by state. 

Medicaid

While State-run Medicaid programs for those >21 years may vary in coverage, children on Medicaid from age 0-21 are specifically protected at the Federal level by powerful EPSDT (Early Periodic Screening, diagnosis, and treatment) mandates in every state. This means that services that may be optional for adults at the state level are required for children on Medicaid EPSDT Medicaid law.

Specifically, children covered by Medicaid have a right to receive all medically necessary services in the amount, scope, and duration needed to correct or ameliorate physical and mental health conditions through the federal Early Periodic Screening Diagnostic and Treatment mandate when identified through routine medical screening.  A partial list includes medical care or other remedial care recognized by licensed practitioners within the scope of their practice, home-based care and nursing in the home, personal care services, physical, occupational, and speech therapy, prosthetic devices, other diagnostic, preventative, and rehabilitation service as will any other medical or remedial care recognized by the Secretary of Health and Human Services.  Top of Form

Private Insurance

While children with private insurance do not have the same medical necessity standard, they do have rights to various services depending on the type of insurance.  For more information on such rights, please see here

Education Services

Providers can also be advocates for children with disabilities to receive all necessary services in schools by giving input to a child’s Individualized Education Plan (IEP). Children have the rights to a free and appropriate education tailored to their needs through the Individuals with Disabilities Education Act. It may be advisable for therapies to be scheduled before or after school hours so that they do not interfere with education or socialization. This plan would need to be specified on the IEP. If children are not getting needed services, families have the right to mediation, appeals, and legal action.  Providers can help families by providing written support for children’s needs. Providers can address the school's disagreement more effectively by participating in mediation and hearings if possible.

Income Support

Many children with disabilities can qualify for federal cash payments through the Supplemental Security Income (SSI) program and, in some states, additional funds.  Providers can refer and advocate for patients to get such benefits. 

Legal Advocacy

If people with disabilities are denied needed services, referring to and collaborating with Medical-legal Partnerships is often helpful.  Each state also has federally designated Protection & Advocacy Organizations designed to help individuals with disabilities with their civil rights.  Providers can work with such organizations in joint advocacy at the local level on behalf of individual patients or groups of patients in need of systemic changes. 

Public Health System resources

Through the Maternal and Child Health Block Grant, each state has a Title V program for children with special health care needs that can be a resource to help advocate for patient needs and systems improvements. 

Last updated: July 5, 2022

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