People living with CMT and other disabilities may be protected by and eligible for benefits under several federal laws. Below is an overview of key legislation and programs relevant to the CMT community.

Americans with Disabilities Act (ADA) and ADA Amendments Act of 2008 (ADAAA)

The ADAAA prohibits discrimination against individuals with disabilities, those who have a record of a disability, or those who are regarded as having a disability. A disability is defined as a physical or mental impairment that substantially limits a major life activity. The law applies in employment, public and private schools that receive federal funding, other public entities, and public accommodations. Covered entities are required to be accessible and to make reasonable accommodations for people with disabilities.

The ADA is enforced by the United States Department of Justice, the Equal Employment Opportunity Commission, or the Department of Education, depending on the situation.

Reference: www.ada.gov

Family Educational Rights and Privacy Act (FERPA)

FERPA protects the privacy of student education records. It prohibits disclosure of records without parental consent, gives parents the right to review records and request corrections, provides a process to request a hearing if a correction is not made, and allows parents to submit a statement about contested information in their child’s record.

Reference: www.ed.gov

Individuals with Disabilities Education Improvement Act (IDEIA)

The IDEIA ensures that qualifying children receive a Free Appropriate Public Education (FAPE), including special education and related services that allow the child to benefit educationally and make progress in the general curriculum. Part C of the law applies to infants and toddlers; Part B applies to children ages 3 to 21.

Under Part C, qualifying infants and toddlers receive an Individualized Family Services Plan (IFSP) that outlines early intervention services tailored to the child’s developmental needs. Services may include health services, occupational therapy, physical therapy, assistive technology, and parent training.

To be eligible for special education services under Part B, a child must be found to have a qualifying disability under the IDEIA. This may include a developmental delay (for children ages 3 to 9), an orthopedic impairment, or another health impairment that adversely affects educational performance. Qualifying children receive services in accordance with an Individualized Education Plan (IEP), which outlines specialized instruction, related services (such as occupational or physical therapy), supplemental aids and services, and program modifications. The IDEIA applies even if the child is advancing from grade to grade, and covers both academic and nonacademic settings.

The IDEIA includes detailed procedural protections, including the right to file for due process to allege denial of FAPE with your State Education Agency.

Reference: www.idea.ed.gov

Medicaid Waivers

Medicaid Waivers allow severely disabled children and adults to be cared for at home and to qualify for Medicaid based on the individual’s own income and assets, rather than the income of legally liable relatives. This is an important benefit for children with severe disabilities whose parents earn too much to qualify for standard Medicaid or Supplemental Security Income (SSI). Each state may operate its own waiver program, and the scope of disabilities covered varies by state.

Reference: www.pascenter.org

No Child Left Behind (NCLB)

NCLB seeks to ensure that all children have a fair, equal, and significant opportunity to receive a high-quality education. It requires that all groups of children, including children with disabilities, make adequate yearly progress. Children taking standardized tests required by NCLB are entitled to the accommodations outlined in their 504 Plan or IEP.

Reference: www.ed.gov

Section 504 of the Rehabilitation Act of 1973

Section 504 prohibits disability-based discrimination in programs that receive federal financial assistance, including all public schools and many private schools. It requires schools to provide a Free Appropriate Public Education (FAPE) to children with disabilities. Schools must conduct a complete evaluation to determine the scope of a child’s educational needs resulting from the disability. Section 504 provides accommodations and modifications that allow children to access both academic and nonacademic areas of school, including extracurricular activities and before- and after-school care, alongside their non-disabled peers. Qualifying children receive a 504 Plan outlining their accommodations and services, which may include occupational or physical therapy. A child may qualify for a 504 Plan even if they do not qualify for an IEP under the IDEIA.

Section 504 is enforced by the United States Department of Education, Office for Civil Rights.

Reference: www.ed.gov

Social Security Disability Income (SSDI)

SSDI pays benefits to people who can no longer work because of a medical condition expected to last at least one year or to result in death. To qualify, the individual must have worked at some point during the three-year period before the disability began.

Reference: www.benefits.gov

Supplemental Security Income (SSI)

SSI is an income supplement program designed to help people with disabilities who have little or no income. Income-eligible children under 18 with a physical or mental impairment that results in marked and severe functional limitations, and that has lasted or is expected to last at least 12 months or to result in death, may qualify. Income-eligible adults with an impairment that prevents any substantial gainful activity and that is expected to last at least 12 months or to result in death may also qualify. SSI eligibility is based on wages, unearned income, in-kind income, and deemed income (which includes a portion of income from a spouse or parent with whom the applicant lives).

Reference: www.ssa.gov