State Benefits and Prader-Willi syndrome
ALTCS
Arizona Long Term Care System
All ages. State-funded health insurance for people with disabilities. ALTCS is the disability division of AHCCCS (pronounced “access” Arizona Health Care Cost Containment System). But unlike AHCCCS, children with qualifying disabilities are eligible regardless of parent’s income. Adults with qualifying disabilities are also eligible assuming they do not earn more than the allowed amount.
“A pre-admission screening, called the PAS, is administered to every individual for the program. This functional assessment is completed by a social worker or nurse to assess if the applicant’s condition requires the level of health care which is provided in a nursing or intermediate care facility. However, the applicant can live in their own homes or an assisted living facility and receive needed in-home services. The PAS is largely based upon assessing the applicant's ability to perform activities of daily living (eating, walking, toileting, bathing, and dressing); communication abilities; emotional and cognitive functioning (disruptive behaviors and aggression).” source
Unfortunately, this assessment does not necessarily take into account the most challenging aspects of Prader-Willi syndrome and eligibility can be very borderline. When seeking approval, it is important to set your child’s strengths aside and focus on their weaknesses. Always give a hard “NO” to questions if your child is not performing that task 100% of the time. The questions do change depending on the age of the child. If your child is denied one year, they may be eligible the next.
With ALTCS insurance; all doctors visits, medications and therapies are covered. You may also be eligible for respite, rehabilitation and attendant care services. These services need to be approved by your DDD support coordinator (see below) and are enormously helpful in easing caregiver burden. If not already enrolled, we encourage you to apply using the link below. If denied, we encourage you to appeal.
AzEIP
Arizona Early Intervention Program
Ages 0-3. Most newborns with PWS are enrolled in AzEIP out of the NICU and qualify based on their hypotonia (low tone) and therefore developmental quotient. With AzEIP, your child is assigned a support coordinator and a therapist. The therapist will provide therapy sessions in the home. This will be one of many therapies your child with PWS will need. Other necessary therapies can be obtained independently of AzEIP in clinics throughout the state. Enrollment in AzEIP is very helpful when seeking ALTCS approval. If your child was not automatically enrolled out of the NICU, please click the link below to apply.
DDD
Division of Developmental Disabilites
Ages 3-6. Your child should be automatically transferred to DDD by AzEIP at age 3. With DDD, you will be assigned a support coordinator responsible for authorizing and monitoring the services your child receives.
Age 6. At age 6 begins the “redetermination” process. Children receiving services are re-evaluated to determine if they are still eligible. This has been problematic for some of our Arizona PWS families. Because Prader-Willi syndrome is not currently a qualifying diagnosis, most individuals with PWS are qualifying as having a “cognitive disability”. Of course, PWS is so much more than varying degrees of cognitive disability. We believe it unjust some families are losing services based on this metric and are currently working toward the inclusion of Prader-Willi syndrome as a qualifying diagnosis for state-funded services.
Age 6-18. The support coordinator’s role remains the same, monitoring and authorizing services received. A therapist may still visit the home for therapies or these may take place at school. A representative from DDD should also be present at your child’s IEP (Individual Education Plan) meetings.
Adult. Continuation of the support coordinator’s role of authorizing services. DDD may refer the individual to the Vocational Rehabilitation (VR) program for employment opportunities.
SSI
Supplemental Security Income
Ages 0-18. Supplemental Security Income (SSI) is a federal benefit that gives monthly allowance for individuals with disabilities on limited incomes. PWS is usually a qualifying disability. For children under 18 living at home, eligibility is directly connected to the parent’s income. Click here to determine if your household income is within the eligibility range.
Ages 18+ Adults with PWS should be eligible for SSI benefits regardless of parent’s income or where they live (home or not). The process, however, has been described as very stressful by those who have gone through it. An automatic rejection is likely. In this event, you will need to request an appeal in which a psychiatrist contracted through the agency is assigned to the case for the consult. You are not allowed to bring any supporting documents with you for the evaluation but you can have professionals on your child’s team (doctors, therapists, school personnel, etc.) submit letters of support to Social Security beforehand. In order to receive the full entitled amount, you will need to claim your child pays rent (even if it is to stay at home). During the evaluation, guardians are asked to leave the room while the agency determines eligibility. After this meeting, most individuals with PWS do qualify.