When A Child Turns 22

As you plan for your child's future, try to develop a comprehensive plan that will establish:

• Life-long supervision and care.
• Maintenance of government benefits.
• Management of funds.
• Plans for final arrangements (burial).
• Clarification of roles so that family conflict will be avoided.
• A Guardian or Conservator.

A guardian or conservator is a person charged with overseeing care for someone else and is responsible for making financial, legal, and medical and lifestyle decisions, such as where the person will live. A guardian can be appointed either full-time or on a limited basis. If on a limited basis, the person would only oversee certain aspects of someone's life, such as financial planning or career issues.

Guardianship is an important issue for parents of children with some special needs because when a child turns 18, parents are not longer legally entitled to decide things on their behalf unless they file for guardianship and prove that the child is unable to make decisions for himself. You must prove that your child is unable to handle decisions on matters such as money, property, or other issues. Guardians receive the right to make decisions on the adult child's behalf, although they are not legally obligated to support that person financially.

Parents of children with special needs must also plan for the eventual death of the parent guardian and to appoint another trusted person to assume guardianship. If no trusted relative or friend can be found, an agency may be appointed to oversee the adult child. Often, however, these agencies are overburdened and unable to give adequate attention to the responsibility.

Parents of children with special needs have to plan well in advance for the day their child turns 22, at which time the state no longer provides for their child's education. What happens next, of course, will depend on how severe a child's condition is. Options for living situations include:

• Continuing to live at home.
• Living in a group home, with live-in support.
• Living in a group home, with periodic support.
• Living in a shared environment, less structured than a group home, with or without supports.
• Living in an independent situation, but with periodic care.
• Living in communities created specifically for people with developmental disabilities (such as a Camphill model, where people live and work with lots of support).
• Living in a larger facility with more residents and more assistance.
• Living in a state institution -- which is primarily for those at risk of harming themselves or others.

The federal government provides disabled persons with income and health care benefits under Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid and Medicare programs. Someone knowledgeable about these programs and related legal requirements should be involved in overseeing your child's care to ensure that your child doesn't become disqualified for a benefit based on inheritance or other gifts.

Parents of children with special needs usually establish an Irrevocable Special Needs Trust for their child. This document enables parents to set aside money for their child, but not in that person's name. That way, the child will not lose Supplemental Security Income (SSI) health care benefits. When a trust is set up, someone reliable and financially knowledgeable should be assigned as Trustee to oversee the trust.

A Letter of Intent is a written directive for your child in the event that something unexpected happens and you are no longer able to oversee his care. It is not a legal document but does have legal weight. It should explain your specific wishes for daily care of your child, including:

• Your child's preferences for foods as well as his dietary requirements.
• Your child's favorite activities and instructions on how he likes to do them.
• Your child's favorite music and when he prefers to listen to it.
• Your child's preferences for being bathed, dressed, and toileted
• Your child's medication schedule, along with information about which doctors prescribe the medications and when the doctors need to be seen again.
• Living situations that you believe will provide your child with security, dignity and self-esteem.
• Your preferred medical and dental care providers and care assistants.
• Your values for how your child should be treated and how behavior should be managed.
• Your child's communication style and how to interpret your child.
• Your child's religious affiliation and practice.
• Your wishes for final arrangements for your child.
• Your wishes for a Guardian and Conservator for your child -- someone who can make financial, medical, and living situation decisions for a child who is unable to do this on his own.
• Videotapes that illustrate the preferred ways of doing things with your child.

here are some suggestions:

• Have an occupational therapist (OT) teach your child the social and vocational skills needed in a workplace. The OT can also help identify which kind of work would be most appropriate for your child.
• Arrange for counseling to teach your child accident prevention skills, as well as information about nutrition, alcohol, contraception, obesity, etc.
• Enroll your child in a support group for others in her situation. This will offer both structure and social interaction.
• Make sure your child goes to a physician who is sensitive to medical and communication issues that people with his disability have, one who will be able to recognize and treat problems your child is at increased risk for but may not be able to verbalize.
• Closely monitor your child who is living independently. If you cannot do it yourself, hire a social worker or special needs caregiver to check in and help out.

Make sure your child goes to a physician or therapist who is sensitive to medical and communication issues people with their particular special need may have, one who will be able to recognize and treat problems your child is at increased risk for but may not be able to verbalize.

Here are some suggestions:

• Find or create a living situation near where you live, so that you can easily visit and make sure things are going well.
• Arrange to "check in" with your child each day.
• If your child will have a caregiver, interview the person carefully, and arrange for weekly follow-up conversations to make sure the caregiver is attentive to the issues you are concerned about. And, of course, make sure you all have emergency numbers to reach each other whenever necessary.
• Help devise a balanced schedule for your child, one that includes activities, socialization, work, and time to relax.
• Expect that this transition to independent living for your child will be a time of intense emotion for you.

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregiver, go to Care.com.