When Children With Special Needs Grow Up

Updated on September 7, 2017

The team of people parents rely on will shift and change as their child grows up. Support organizations for children and teens have cut offs based on age, and may not be able to provide the assistance depended on for years. Seeking out new teams and setting up new avenues of help should begin as early as possible, to help fill the many gaps that may arise.

Special needs students transitioning out of public school may be between the ages of eighteen and twenty-three, depending on the state and the child’s diagnosis/IEP, while other “aging out” issues may pop up with kids as young as fourteen. In order to help manage the stress of this enormous change in a person’s life, it’s important to address the following areas:

• Financial Matters


• Legal Matters


• Education/Training


• Health care

 

 

Financial Matters

The first step in looking ahead regarding financial matters is to see if the child qualifies for Supplemental Security Income (SSI). Begin the process at the Social Security Association website. There is a Benefits Eligibility Tool that helps you determine if your family member qualifies for this means-based program. Depending on the state and eligibility (including whether the person receives housing or income from other sources), SSI provides a limited monthly cash benefit and most importantly, access to Medicaid.

A child may also collect Social Security Disability Insurance (SSDI) based on a parent’s work record and whether they are already receiving Social Security benefits. Under SSDI, the “adult disabled child” of the Social Security beneficiary receives a monthly benefit check, as long as he or she doesn’t perform substantial work, defined as earning more than $940 a month. After receiving SSDI for two years, the adult child with disabilities also begins to receive Medicare, a substantial benefit.

Families with more assets may consider opening a trust for their family member. Speak with a lawyer to determine your state and local parameters for this; the trust may provide housing, medical care and living expenses as they grow older.

 

 

Legal Issues/Housing

In much of the country, a child obtains decision-making power once they turn eighteen. This is true, even for children with special needs. If it is determined that the child will need assistance with making decisions in personal and financial matters, the parents can petition for guardianship.

A less costly and complicated option is power of attorney. Speak with a lawyer to determine which would be the best option for your family. If you need assistance finding a lawyer versed in these issues, you can start with the Special Needs Alliance.  Also, every state must have a legal advocacy organization for people with special needs. Check your state’s website or check for state-by-state information via the National Disability Rights Network.

Another part of making long-term legal decisions is housing. Parents of children with special needs have a specific need to make provisions for living arrangements. Is the named guardian in legal documents able to provide an appropriate home for the person? Will this move disrupt medical care and work/training? This is a decision to be made before it becomes an emergency situation.

For more information on programs to assist those with special needs find housing, work and training, start with the National Gateway to Self-Determination or your state’s Department for People with Developmental Disabilities.

 

Education and Training

Despite willingness and ability, many adults with disabilities do not work. A lack of jobs and training hamper those with a need and desire to obtain a job.

The Individuals with Disabilities Education Act (IDEA) mandates that special education plans begin transition planning when a child turns fourteen. A written transition plan must be incorporated into a child’s Individualized Education Program (IEP), outlining the steps a school will take to help a child with special needs acquire skills necessary for an eventual move into the work force. By sixteen, the school must begin formulating a path to development programs based on the child’s skill set.

The tricky middle ground once a child with special needs ages out of school and vocational programs is finding work while maintaining the strict earning rules of their social security programs. The Social Security Administration (SSA) offers several programs to help people find work. Two programs, the Ticket to Work Plan and the PASS (Plan for Achieving Self Support) program, address the specific concern of working a career without having to worry about losing benefits.

As every government program is full of rules and restrictions, it’s imperative for parents and guardians to be aware of the full implications of working while also receiving benefits.

 

Health Care

If the family of a child with special needs already has private insurance, consult the insurance company to determine what their qualifications for continued coverage entail. An insurance company may not have the same definition of disability as the SSA.

If a parent’s private insurance does not provide the coverage their child needs beyond the age of eighteen or twenty-one (depending on the insurance company), the next resort is Medicare or Medicaid coverage.

Beyond these government programs, local and state governments may offer their own health care coverage for adults with disabilities. Check your state’s website for more information.

 

Conclusion:

The transition from childhood to adulthood for people with special needs can be a complicated one. In a life already fraught with paperwork, this brings on a whole new pile! Legal and financial decisions, healthcare questions – with so much to navigate, it’s a good idea to begin early! As the child’s IEP begins to prep for the future, that should be a cue to start compiling information and getting a head start.

 

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