Transition to Adulthood



Public Benefits & Legal Issues

Medical Assistance (also called Medicaid and ACCESS)

Medical Assistance eligibility for children on the basis of disability (PH-95 Children with Special Needs), informally referred to as the “Loophole Category,” ends at age 18. To continue receiving Medical Assistance, the individual with a disability must apply and be approved for Social Security (see Social Security in this section of the Guide) OR apply for Medical Assistance under a different category.

At age 21, certain services that were covered are no longer covered by Medical Assistance. Call the phone number listed on the back of the Medical Assistance ID card to ask about changes in coverage at age 21 or contact Pennsylvania Health Law Project, 800-274-3258.

Early Periodic Screening Diagnosis Treatment (EPSDT)
Early Periodic Screening Diagnosis Treatment (EPSDT), which provides children on Medical Assistance with free preventive health care, ends at age 18.

Wraparound
Wraparound services to address complex mental health needs end at age 21.

Social Security
800-772-1213, TTY 800-325-0778

Supplemental Security Income  (SSI)
At age 18, individuals with disabilities can apply for Supplemental Security Income (SSI). The Social Security Administration does not count the income and assets of the parents when deciding whether an adult 18 or older meets the financial limits for SSI. Only the applicant’s income and resources and that of a spouse, if any, are counted.

Upon approval, the individual is automatically enrolled in Medical Assistance.
Children who already receive Supplemental Security Income (SSI) benefits based on disability, limited income/assets, and parents’ limited income/assets are considered to be adults at the age of 18, but do not have to re-apply.

At age 18, the Social Security Administration (SSA) reviews the recipient’s medical condition. SSA usually does this review during the one-year period that begins on the individual’s 18th birthday.
SSA uses the following definition of adult disability to decide whether the 18-year-old has a disability:
A physical or mental impairment, or combination of impairments, that is expected to keep a person from doing any "substantial" work for at least a year or is expected to result in death.

Social Security Disability Insurance (SSDI)
The SSDI program pays benefits to adults who have a disability that began before they became 22 years old.  SSA considers this SSDI benefit as a “child’s” benefit because it is paid on a parent’s Social Security earnings record.  The applicant must be unmarried. For an adult with a disability to become entitled to this “child” benefit, one of his or her parents:

  • Must be receiving Social Security retirement or disability benefits; or
  • Must have died and have worked long enough under Social Security.

SSDI “child” benefits for an adult with a disability continue as long as the individual remains disabled. The applicant does not need to have worked to get these benefits.

Section 301 – Provision to Continue Receiving Benefits
Under Section 301 of Social Security law, an individual with a disability who has been receiving Supplemental Security Insurance (SSI), Social Security Disability Insurance (SSDI) and Medical Assistance -- but who, at age 18, does not meet eligibility requirements for adult disability -- can continue to receive benefits if enrolled in an approved vocational rehabilitation program or if under an active Individualized Education Plan (IEP).

Working While on Social Security
Individuals 18 or older who receive Supplemental Security Insurance (SSI) or Social Security Disability Insurance (SSDI) can use the Ticket to Work program to obtain vocational rehabilitation, training, job referrals and other employment support services free of charge. Call 866-307-1477 to reach MAXIMUS, a private company that manages the Ticket to Work program.

In addition to the Ticket to Work Program, Social Security offers “work incentives” that serve as a bridge between disability benefits and financial independence. Call 800-772-1213 or 800-325-0778 – TTY.

See the Medical Insurance and Public Benefits section of the Guide for more information about Medicaid and Social Security.

Medicaid Waivers

Support Services Waiver – or simply “waiver” – is a shortened term for the Medicaid Home and Community Based Waiver Program created under Title 19 of the Social Security Act. This program provides funding for an array of services and benefits to individuals who might otherwise need institutional care.

The term “waiver” comes from the federal government "waiving," or not applying, certain Medicaid rules which would otherwise require services to be provided in a hospital or institutional setting. The “waiver” allows services to be provided in the community. Waivers provide home and community-based services to children and adults who meet certain criteria. These services will allow the individuals to avoid institutional care.

In Pennsylvania, the Department of Public Welfare administers 11 Medicaid waivers. Each waiver has its own unique set of eligibility requirements and services. In addition, the person must meet income and asset guidelines. Financial eligibility for waivers for children age 3 or older is based on the income of the child, not the parent.

Once the person is approved for a waiver, a care plan is established and services can begin. Some waivers have long waiting lists. Services are granted according to need and position on the list. Priority is given to individuals whose need for residential placement is critical, such as in the event of the death of a caregiver or closure of the institution where the individual resides.

Medicaid Waivers for Individuals with Disabilities Age 18 and Older

Adult Autism Waiver
For individuals 21 or older with a diagnosis of Autism Spectrum Disorder.

AIDS Waiver
For individuals 21 or older who have symptomatic HIV disease or AIDS.

Attendant Care/Act 150
Enables individuals with physical disabilities ages 18-59 who are mentally alert to continue to live in their homes with support and services.

COMMCARE Waiver
For individuals age 21 or older who have a diagnosis of Traumatic Brain Injury, substantial functional limitations, and the need for Special Rehabilitative Facility (SRF) level of care.

Community Services Program for Persons with Physical Disabilities (CSPPPD)/OBRA Waiver
Provides services to people 18 or older with severe developmental and physical disabilities, such as cerebral palsy, epilepsy or similar conditions (onset prior to age 22).

Consolidated Waiver for Individuals with Mental Retardation
Provides services to eligible people age 3 or older with mental retardation so that they can remain in the community.

Independence Waiver
Provides services to individuals age 18 and older with severe physical disabilities to allow them to live in the community and remain as independent as possible.

Person/Family Directed Support Waiver
Provides services to eligible people age 3 or older with mental retardation so that they can remain in the community.

HIPAA
Health Insurance Privacy and Accountability Act (HIPAA) protects the privacy of health information. At age 18, individuals may sign HIPAA forms to protect the privacy of their health information.

Guardianship

Every person 18 and older, regardless of disability, is presumed by the law to have “capacity – that is, able to make decisions, manage their own personal and financial affairs, and provide for their own health and safety."

An adult may be determined to be “incapacitated” only by a court upon the showing of clear evidence. This means that upon attaining age 18, in most cases, individuals with disabilities acquire all of the rights of every other adult.

However, many individuals with disabilities will require lifelong support and assistance with their personal affairs. Some of the legal tools used to assist individuals with decision-making and financial planning may include:

  • General Power of Attorney
  • Advanced Medical Directives and Living Wills
  • Multiple Party bank accounts
  • Supplemental Needs Trusts

If all possible supports are insufficient, a guardianship may be necessary to protect the individual from being taken advantage of by others. 

The Pennsylvania Guardianship Statute defines an incapacitated person as:

“an adult whose ability to receive and evaluate information effectively and communicate decisions in any way is impaired to such a significant extent that he is partially or totally unable to manage his financial resources or to meet essential requirements for his physical health and safety.“ 

In Pennsylvania, a guardianship may be limited in scope or duration, and may be over the estate of the person or over the person himself.”

See the Medical Insurance and Public Benefits section of the Guide for more information about Social Security, Medicaid, Waivers and other public benefits.

See Disabilities and the Law in the Family Support section of the Guide for more information about legal issues.