Securing Benefits


Medical care and Financial benefits

Securing Benefits

Of all the things that parents worry about as their child approaches transition, the future of their child’s financial and medical benefits may be the most nerve racking. While you can think about housing and employment when you’re ready, medical care and financial benefits are tied to the calendar, and they will disappear or convert whether or not you’re ready for them to do so.

To prepare for this transition, start by getting organized:

  • Make a list of all of the benefits your child receives, whether they are in the form of monetary payments or support services.
  • Make a list of all the medical providers your child sees and the therapies your child receives.
  • Make a list of your child’s current medications.
  • Organize your paperwork in one place, including medical records and school records, your child’s birth certificate and social security card, contact information for the medical providers, therapists and services you use, and any other documents documenting your child’s disability.

Begin preparing for the transition to adult care in early adolescence, if possible. Now is the time to start asking questions about your child’s future care and receiving recommendations of doctors, therapists, and specialists that can provide it. It’s also important for your child to begin assuming responsibility for his or her medical conditions, perhaps going into the doctor’s office without you there.

Here are four areas to think about as you search for new medical providers:

  1. Location
    – Is the office easy to get to?
    – Can your child get there on his or her own?
    – Is it wheelchair accessible?
  2. Relationship
    – Does this doctor explain things clearly?
    – Does this doctor have a good rapport with your child?
  3. Convenience
    – Are office hours convenient?
    – Can you reach the doctor or staff during off-hours?
  4. Reputation
  • Does this provider come recommended?
  • Does this provider have expertise or experience with my child’s disability?
  • At what hospital does this provider have admitting privileges?

Social Security Benefits
Social Security benefits are the most important benefit your child can receive as an adult, not only for their own sake, but also because SSI eligibility is often a prerequisite for other benefits.

  • Supplemental Security Income (SSI)
    When your child turns 18, he or she becomes eligible for SSI regardless of the parent’s income. SSI is a needs-based program that provides monthly payments to people with disabilities who have limited income and resources. While monthly SSI payments are fairly small, SSI eligibility is the gateway to other important programs, particularly access to the Medicaid health care program, which will be discussed more below. It can also be the entry into a variety of vocational training and group housing programs. In addition, many states also provide a supplemental monetary benefit that is added to the SSI benefit. All of these factors make it important to apply for SSI. You can complete much of the SSI application online. If your child was already receiving SSI payments before their 18th birthday, they will need to go through a redetermination of eligibility at age 18.Because SSI is only available to people with fewer than $2,000 in assets, it is important to safeguard your child’s eligibility by putting any money you are setting aside for him or, including inheritance, life insurance payment, or legal settlement in a Special Needs Trust.There are a number of Work Incentive programs that allow your child to work and continue receiving SSI benefits, both while he or she is a student and afterward. The Work Incentive program may also allow your child to deduct certain disability-related expenses from their income total, including attendant care, transportation, assistive devices, or job coaches.
  • Social Security Disability Insurance (SSDI)
    Unlike SSI, which is needs based, SSDI is an entitlement program. This means that assets do not determine eligibility. An unmarried adult who had special needs before age 22 may be able to receive child’s benefits if a parent is deceased or has started collecting retirement or disability benefits. It is considered a “child’s benefit” because it is paid based on the parent’s Social Security earnings record. The “adult disabled child” of someone who is collecting social security can receive a monthly benefit check as long as he or she is not earning more than $940 a month. After two years of collecting SSDI payments, the adult special needs child will also receive Medicare. In many cases, an adult who has had special needs since childhood will receive SSI benefits until his or her parents retire and then switch to the SSDI program, which has a higher benefit and more flexible rules about income and assets.Medical Coverage
  • Private Health Insurance
    If you have private insurance, it’s important to review your policy carefully so that you know what will be covered when your child reaches age 18. Under the 2010 Patient Protection and Affordable Care Act (“Obamacare”), private insurance policies will continue to cover your child under your policy until age 26. Some states require insurance companies to continue covering special needs adult children past that age. If you get insurance through work, check with your Human Resources department to find out if this is true in your state, or check with your state’s Department of Insurance. Because your private insurance policy may not cover all the drugs or services your child needs, it may be important to have Medicaid or Medicare coverage to fill these gaps. For that reason, make sure that claiming your child as a dependent will not jeopardize their eligibility for those programs.
  • Medicaid
    Medicaid is a government-sponsored insurance program for people of all ages who lack the income or resources to pay for health care. Access to Medicaid is granted when an adult begins receiving SSI. These benefits are particularly important if your child has medical needs because Medicaid may pay for medication and equipment that insurance doesn’t cover. If your child is already receiving Medicaid benefits, he or she will have to reapply after they turn 18.
  • Medicare
    Medicare is a government-sponsored insurance program for people over 65 and some younger people with disabilities. Access to Medicare is granted two years after a special needs adult child begins receiving SSDI. While not every medical provider accepts Medicaid, most everyone accepts Medicare. “If I have a choice between Medicare and Medicaid, I want to be on Medicare,” says Mary Anne Ehlert.

Once your child turns 18, the law presumes that he has the capacity to make his own medical, personal, and financial decisions, regardless of disability. If you feel that your child does not have the ability to make safe and informed
decisions, there are a variety of legal options.

  • Guardianship & Conservatorship
    A guardian or conservator – terminology varies from state to state – has received legal authority to make certain decisions on behalf of a person with a disability who has been deemed “incapacitated,” meaning that she or he can’t participate meaningfully in decisions about their life. The arrangement is usually done with the help of an attorney, as it requires court appearances and ongoing interaction with the court. Guardianship or conservatorship can be limited to certain areas such as medical care.
  • Durable Power of Attorney
    Durable Power of Attorney allows a person with a disability to give someone else the power to make financial or health care decisions for her or him. It is simpler and less costly to set up than guardianship or conservatorship.
  • Advanced Medical Directives & Living Wills
    Advanced Medical Directives and Living Wills allow a person with a disability to state their intentions about medical treatment in the event they become too ill or incapacitated to participate in decisions about their care.
  • Trusts
    Setting up a Special Needs Trust, sometimes called a Supplemental Needs Trust, will create financial stability for both your child and for future caregivers.Determining whether you should pursue guardianship or conservatorship is “a hard decision for people because what they’re doing is taking people’s rights away,” Ehlert says. She advises parents to think through various scenarios. For example, if your young adult needs surgery, would he or she be able to assess the benefits and risks on their own? Could she or he make a decision after getting advice from you or other trusted adults? Or would you need to make the decision for her or him?Autism Speaks has created a useful checklist to use when assessing what kinds of decisions a young adult with special needs can handle on their own and what aspects of their life you may need to retain authority over. For each area, ask yourself whether your child can do the following on their own:


  • Seek medical care when he or she is sick or injured
  • Weigh the risks and benefits of any particular medical procedure that is being proposed
  • Understand the need for routine medical care
  • Understand that even if a medical procedure is painful or unpleasant, it may still be necessary
  • Assess whether a particular medication is desirable, even though it may have unpleasant side effects
  • Provide accurate information about his or her medical condition
  • Follow medical advice


  • Grasp the essentials of his or her learning problems and understand the services needed to learn effectively
  • Advocate for himself or herself to obtain necessary education services


  • Understand money basics, including the purpose of money, how to count money, and how to make change
  • Safeguard his or her money so that it is not lost or stolen
  • Budget money so that some funds are available to pay expenses at the end of the month

Vocational/Adult Services

  • Apply for services from the Department of Disability Services, Department of Mental Health, or other agency that serves people with disabilities
  • Access necessary services and supports, such as job training, employment support, or a day habilitation
  • Negotiate with the agency overseeing his or her care to obtain the best possible services

Living Arrangements

  • Provide for his or her own physical care and well-being, such as purchasing proper food, clothing, and shelter
  • Live harmoniously in a group setting, respecting others’ needs for quiet, privacy, and cleanliness

Legal and Decision-Making

  • Understand the implications of signing documents
  • Make sound decisions in important areas such as living arrangements, school, and work

Self-Care and Safety

  • Have personal safety skills, such as staying out of dangerous areas, not talking to strangers, and keeping doors locked
  • Know how to summon help in an emergency, such as a fire or accident
  • Have basic safety skills, such as being careful around fires, stoves, candles, etc.


  • Communicate effectively (verbally or by other means)
  • Understand that he or she has choices and is able to express themselves