Planning for the future care and quality of life of a child with special needs may involve complex financial and legal arrangements to preserve assets for the child's care without jeopardizing eligibility for government benefits.
When should parents develop plans for their children?
In developing plans for your children, consider the quality of their future as well as their financial support. Planning for the future should begin during the early teen years when the children, parents and school(s) begin developing transition plans. Planning that focuses on the child's goals for continuing education, job training, employment and living arrangements should be augmented by discussions about money management plans, coping skills and social/recreational opportunities. Continued planning into adulthood is important even if the child has mastered independent living, as the child probably still relies on the parents for advice and emotional support.
What should be considered when planning for the future?
When planning, you may want to consider including:
- Letter of intent. Although not a legal document, a letter of intent can be a useful tool for parents who want future caretakers to understand and support a family member's current quality of life. In it, parents can describe their child's likes and dislikes, diet, education, work, recreational needs and health care issues. Remember to include information about doctors, therapists and teachers as well as instructions for medications and therapeutic procedures.
- Living arrangements. Parents of children with special needs or disabilities who have reached adult age but remain at home, unable to live independently, should have a plan for alternative living arrangements. There are many options, and parents will want to choose the one that best meets their child's needs. Options may include group or supported living homes, public or private residential facilities, boarding homes, nursing homes and mental hospitals. If you and your child are considering a group home, you should be advised that some homes have waiting lists of many years, which should be taken into consideration.
- Will. A will is the centerpiece of a special needs plan. After a person dies, the will provides for property distribution, naming a guardian (subject to state court confirmation), and creating a trust or transferring assets into a trust. In special needs situations, the absence of a will could result in a distribution of assets that might be mismanaged or jeopardize government benefits, or it could leave guardianship choices to the court.
- Trust. A trust holds money or property for the benefit of another person and usually designates a person or institution to be the trustee to oversee distribution of assets. There are many different types of trusts, including "special needs trusts" specifically designed so that funds supplement the beneficiary's care and do not pay for expenses covered by Supplemental Security Income, Medicaid, or other public funds that are tied to income and assets. Trusts may be funded through a combination of family assets, inheritance, gifts from family or friends or life insurance.
- Survivor Benefit Plan. Military retirees rely on the SBP to provide for their survivors upon their death. You are automatically enrolled in the SBP at the time of retirement unless you take action to decline coverage or reduce the amount. You may also name your children up to age 18 (or age 22 if still in school) as beneficiaries. Some disabled children may receive benefits for life if they became incapable of self-support while they were eligible beneficiaries. Current laws prohibit SBP from being placed into any kind of trust. Special needs families eligible for SBP upon retirement from the military should be warned that these benefits could make the disabled family member ineligible for SSI and/or Medicaid.
- Guardianship. A guardianship is a court-approved legal relationship between a competent adult (the guardian) and a minor child or impaired adult (the ward). It may include full guardianship over all aspects of a person's care, limited guardianship that allows the ward to have autonomy in some areas, or temporary guardianship. Parents of significantly disabled children should be aware that when their child reaches the age of majority, they are no longer considered the legal guardians of that person. The law regards disabled children over the age of 18 (or 21 in some states) as adults unless someone has gone to court to become their guardian. You can also pursue alternatives to guardianship by appointing a representative payee for benefit checks, having joint property ownership and joint bank accounts, and establishing a durable power of attorney or health care proxy. Detailed information about guardianship may be found on the National Guardianship Association website.
What should I do if I am appointed as my child's legal guardian and we have received permanent change of station orders to a new state?
If your family is moving to a new state and you have already established guardianship, it is important to research whether the guardianship is transferable between states. Guardianship is not transferable between all states and may require that you re-establish guardianship after the move. Re-establishing guardianship in the new state should not be as expensive as establishing it in your previous home state.
Where can I get more assistance with planning for the future?
When planning for the future, you can find assistance from a number of resources:
- Installation Exceptional Family Member Programs. Installation EFMPs can help you determine what items you should address in your planning. You can find the local EFMP Manager using MilitaryINSTALLATIONS, by entering the installation and choosing the program/service EFMP Family Support.
- Installation Legal Assistance Office. You can contact your installation's Legal Assistance Office to receive additional information about the legal aspects of special needs planning. Legal Assistance Offices provide assistance for a wide range of legal needs including wills, power of attorney, and advice on issues such as divorce, consumer rights, estate planning, immigration, bankruptcy and taxes. Contact information for Legal Assistance Offices is available through MilitaryINSTALLATIONS or through the Armed Forces Legal Assistance website.
- Military OneSource. You can also call Military OneSource at 800-342-9647 to speak with a consultant. Consultants cannot provide legal advice, but they can research local qualified attorneys who can assist parents with their special needs plan questions.