100C (2)By Eric W. Wright, Ed. D.

FRT (2)

Families often struggle to find the appropriate resources when it comes to meeting the needs of individuals with Angelman Syndrome.  I remember nearly six years ago when my wife and I were contemplating selling our house because we were so confused on how we were going to care for our daughter and address our daughters needs related to mobility.  Part of me was worried about how we would pay for medication, therapy, diet, and preschool.  When the dust of the new diagnoses settled, we started on our path to find resources.  This would be a piece of cake, considering my work as a Family Resource Center Coordinator for the 16th largest school district in the United States.  What I quickly learned, was finding resources was harder than I expected.  Now, six years later and having served back to back Governor appointments on the Kentucky Medicaid and Developmental Disabilities Councils, I still at times feel like a novice.  Oh how resources change, daily! Luckily, I came across individuals who helped us navigate the path to finding government benefits which in turn helped us stabilize our family.

My goal as a member of the Angelman Syndrome Family Resource Team, is to help Angelman Families learn and connect to the right people within their respective states.  This is a challenge because each state is different in the approach to benefits.  So let’s get started with the basics.


Serving on the Developmental Disabilities Council proved to be one of the most enlightening experiences of my life.  I was passionate about my service as a father of a child with Angelman Syndrome. Eventually my passion led to a leadership role on the council and an appointment to our state’s Medicaid Council.  This is when I learned that Angelman Syndrome automatically meets the Federal Governments definition of Developmental Disability.  Specifically, Developmental Disability is defined as a severe, chronic disability which:

  • Is attributable to a mental or physical impairment or combination of mental and physical impairments, and
  • Is manifested before the person attains the age 22, and
  • Is likely to continue indefinitely, and
  • Results in substantial functional limitations in three or more of the following areas of major life activity: a) self-care, learning, self-direction, communication, mobility, capacity of independent living, and economic self-sufficiency.

Quickly, I learned there were Government benefits which relate to having a child with Angelman Syndrome.  First, I learned the Social Security Administration had two programs Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).  SSDI is only available to workers with enough “work credits” and SSI disability benefits are available to low-income individuals regardless of having work credits.  SSDI provides income replacement for eligible individuals who are unable to work due to long-term injury or illness.  These benefits are transferrable to children, particularly children with disabilities.  Most SSDI recipients receive between $300 and $2,200 per month in benefits with the average monthly payment in 2014, being $1,148 and the maximum being $2,642.  Additionally, after 24 months of receiving a disability benefit, Medicare insurance becomes active.  Unlike SSDI, SSI is strictly a need-based program.  To be eligible, you must have less than $2,000 in assets if single and less than $3,000 if married.  In 2014, minimum SSI benefits are $721 per month for an individual and $1,082 per month for couples.  Unlike SSDI, each state has its own requirements and guidelines regarding SSI eligibility.


Each state determines how to use federal funds to develop a state Medicaid plan.  These plans combine federal funds with state funds to operate the Medicaid programs.  States must adhere to certain federal guidelines in the implementation of Medicaid programs.

Individuals with Angelman Syndrome qualify for Medicaid Waiver programs.  These programs are offered through Home and Community Based services waivers, (i.e., 1915 (c) waivers).  For more information on home and community based services visit the following website:  http://www.medicaid.gov/Medicaid-CHIP-Information/By-Topics/Waivers/Home-and-Community-Based-1915-c-Waivers.html

States review level of care (LOC) for families and individuals with Angelman Syndrome based on the age and level of support needed.  It is important to get on each of the various level (i.e., level 1, level 2, level 3) waiting lists as many states have extensive waits.  I cannot emphasis enough the importance of getting on a waiting list as soon as possible.  Also, you can receive waiver supports and services while “waiting” for more comprehensive waiver services (e.g., residential waivers).  While I mention waivers by levels (i.e., 1, 2, 3), many states use various names for waivers and it is important to do your research.

Waivers provide most, if not all of the following supports: a.) respite care, b.) personal care support, and c.) attendant care.  Services provided by higher level waivers (e.g., level 2) may include: a.) community living supports, b.) job coaches, c.) case managers, d.) environmental supports (i.e., home modifications).  Services for the highest level typically include all of the above services with the addition of residential supports for 24/7 residential care including staffed residence and group homes.

The focus of Home and Community Based Services Waivers is to provide support and services within the individual’s community. There are typically two ways to receive supports and services: a) traditional provider – an agency who coordinates care along with all supports and services, and b) self-directed option – which allows the individual and/or representative to coordinate supports through utilizing their own budgets to hire, train, and/or fire individuals within their trusted community (i.e., family, friends, neighbors).  The purpose of “self-directed” options is to allow the individual, with family support, to direct services which impact their quality of life.

The individual with Angelman Syndrome qualifies for Waiver programs based on a state-by-state criteria.  Some states apply the 300% above Federal Poverty Rate (e.g., family of five = $83,730).  Another way to qualify is by medical/institutional deeming in which states consider a child under 18 as if they are in an ICF/MR facility (i.e., institution) and do not count the parents income or assets.  Guardianship becomes very important at age 18-21, depending on state, which impacts the adult with Angelman Syndrome in receiving waiver services.


Once an individual becomes eligible for any level of a Home and Community Based Services 1915 (c) waiver, other Medicaid benefits could be available.  Each state has a State Medicaid Plan which determines how to spend the combined federal and state Medicaid funds.  However, the federal government has mandatory federal Medicaid benefits which include: a.) physician services, b.) hospital services, c.) laboratory and x-ray services, d.) EPSDT services for children under 21, e.) medical and surgical dental services, f.) rural and federally-qualified health center services.  Optionally, states may or may not provide the following a.) prescription drugs, b.) clinical services, c.) dental and vision supplies, d.) prosthetic devices, and e.) physical therapy and rehab services.


With Early, Periodic, Screening, Diagnosis, Treatment (EPSDT), parents of Angelman Syndrome children can gain access to a multitude of supports and services.  The purpose of EPSDT is to prevent the onset of worsening of the disability and illness among children.  The increase of coverage is broad and can include a myriad of services to help a child with Angelman Syndrome having Medicaid.  Each state is required to implement an EPSDT program.


As part of the Omnibus Budget Reconciliation Act of 1990 (OBRA-90), states were authorized to implement HIPP (Health Insurance Premium Payment Programs).  The HIPP program allows a Medicaid recipient and/or family to receive private insurance premium reimbursements in order to help the individual with Medicaid maintain primary insurance coverage.  For this to happen, the Medicaid recipient must be deemed “cost effective” by the HIPP program within the individual’s state.


Each state as part of the DD Act of 1963, receives federal funding for key state advocacy, protection, and education agencies.  If you need help navigating the system of your state, I suggest you contact the state Council on Developmental Disabilities, University Centers for Excellence in Developmental Disabilities (UCEDD), or the Protection and Advocacy agency in your respective state.  These agencies along with our resource team are here to help you with the above resources.