Families trying to decide what level of support would work best for their adult family member with Down syndrome may want to look at options besides guardianship. Individuals with Down syndrome and their families will need to assess the individual's needs and determine how much assistance is appropriate. They may also wish to consult an attorney who is experienced with guardianships to understand what is involved in taking on that responsibility. Other options are listed below. Some of the information provided in the resources below is specific to the state of Illinois. For other states, we recommend reaching out to your local Down syndrome organization and/or chapter of The Arc.
Overviews of Guardianship and Alternatives
Power of Attorney
This option allows individuals to appoint a trusted agent to make decisions or sign documents on their behalf. Power of Attorney can be established for medical decisions (Power of Attorney for Health Care) or for financial transactions (Power of Attorney for Property). The individual with Down syndrome would need to be able to understand the consequences of granting this authority to another person. If families have questions about whether a power of attorney agreement would be appropriate, they should consult an attorney with a specialty in this area.
This option might be appropriate for adults with Down syndrome who are able to make their own choices but might benefit from guidance from trusted family members, friends, and professionals, especially in making important life decisions.
Other Options for Managing Health Care
Government agencies often have their own personal representative forms which allow an individual to designate an authorized agent to communicate with the agency. These forms can make it easier for parents, guardians, family members, or other trusted individuals to help an adult with Down syndrome enroll in government programs and manage any issues or questions which might arise.
Insurance companies may have their own similar form which guardians or family members can complete so that they can assist the individual with insurance-related questions. Contact the insurance company for the form they use.
Other Options for Managing Finances
Achieving a Better Life Experience (ABLE) accounts are special savings accounts for people with disabilities which allow them to build up a certain amount of savings without affecting their eligibility for government programs. An adult with Down syndrome can access these funds directly, but only a Guardian of the Estate can manage the account on the individual's behalf.
Social Security Representative Payee Accounts
Representative Payee accounts allow an agent approved by Social Security to help the Supplemental Security Income (SSI) recipient manage his or her SSI funds. Representative Payees must apply to Social Security to be approved for that role. They must keep track of expenditures and may also be required to file annual reports.
Special Needs Trusts
Special needs trusts allow an individual with a disability to use funds/assets held in the trust without compromising eligibility for government programs with income/asset limits, such as SSI and Medicaid. Trustees manage the disbursement of funds. If families have questions about special needs trusts, they should consult an attorney with a specialty in this area.