Estate and Future Planning
Families often feel overwhelmed by the daily issues and challenges they face in caring for their child with special needs. While it is difficult to look ahead, it is extremely important to plan now for the financial future of your child. Maintaining eligibility for state and federal government benefit programs beyond the age of 18 is an important part of utilizing resources for maximum support. Parents and other caregivers need to understand the implications of their current financial and legal decisions on their child's future.
The Center for Infants and Children with Special Needs at Cincinnati Children's Hospital Medical Center provides information to patients and families to assist in estate and future planning.
Estate Planning | Letter of Intent | Special Needs Trusts | Questions to Ask | Finding an Attorney
Estate Planning
Parents and other family members often want to put money aside to provide lifetime care for their child with special health care needs. As parents age, it may be more difficult for them to provide care. In addition, the individual with a disability may want to be more independent. Having assets in the name of the child with special health care needs, regardless of their age, often disqualifies them from important government programs including Medicaid and Supplemental Security Income (SSI), detailed under financial assistance, that would provide many needed services. While it is natural to want to leave everything to your child with disabilities, having more than $2000 in the child's name can eliminate many government benefits.
Luckily there are special estate planning techniques that can be used to protect your child from losing government assistance.. As part of estate planning, families should look into establishing special needs trusts and / or leaving funds to a trusted family member or friend to be used only for the care of the child with special needs. If done properly, these could still provide the necessary funds to help the individual without disqualifying them from government programs. Funds may also be used earlier in the child's life for such needs as home or vehicle modifications without affecting eligibility for state programs. They can pay for things not covered by government benefit programs, including entertainment, trips and vacations, computer equipment, education, recreation and other items that can add to the individual's quality of life. Any approach should be carefully discussed with a knowledgeable attorney to see what would work best in your situation.
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Letter of Intent
It is often recommended that parents take the time to decide what kind of future life they would like for their child and then describe it in a letter of intent to be included in their estate planning documents. The letter can address their hopes and dreams and reflect what they want for their child in all of the major life areas including living arrangements, child's likes and dislikes, recreation, social and community interests. While not legally binding, the letter can help the future caregiver gain an understanding of the family's vision. The letter of intent can include:
- Medical history of the child including doctors, allergies, medications and any other health related information
- Housing preferences
- Daily needs, life skills and personal care needs
- All About Me Form can help share information about the child's likes, dislikes, activities, friends and special interests
- Hopes and dreams that the family has for the child's future
Share the letter with family members and trusted friends to help build support around your vision. Review the letter on a regular basis and keep it updated to reflect your child's needs and your changing goals.
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Special Needs Trusts
When set up properly, a special needs trust can provide the funds to supplement, not replace, government funded benefits. It is critical that you discuss your options and set up a special needs trust with a qualified attorney. The special needs trust provides the ability to pay for items and services beyond the basic necessities of medical care, room and board, employment, basic personal needs, care and supervision funded by government benefits programs. Funds from the special needs trust can be used to provide enrichment, such as recreation, trips, electronic equipment, gifts, medical / dental expenses not covered by Medicaid, and other personal expenses. For example, if your child's computer or television broke, money to purchase replacements could come from the special needs trust. If your child enjoys going on vacations, this too could be paid for by the trust. There are several sources of information that can help you:
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Questions to Ask an Attorney
While government agencies recognize special needs trusts, they have developed complicated rules and regulations. Special expertise is required in estate planning because laws affecting individuals with disabilities can change frequently. This is why it is critical that you consult an attorney experienced in estate planning for families who have a child with special needs, not just one who does general estate planning. One wrong word or phrase can make the difference between an inheritance that really benefits the person with a disability and one that causes the person to lose a wide range of needed government services and assistance. Don't be afraid to interview special needs attorneys and ask questions before deciding who would be a good match for your individual situation:
- Is special needs the main area of the practice?
- Does the attorney have a proven record of designing and implementing special needs trusts?
- How many special needs trusts has the attorney written?
- Is the attorney thoroughly knowledgeable about current government benefit programs including SSI and Medicaid?
- Is the attorney familiar with recent developments and changes in disabilities laws and regulations?
- Does the attorney have a strong understanding of the language used by special needs professionals?
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Finding an Attorney
To find a lawyer who specializes in special needs estate planning, you can check with your local disability organizations, advocacy agencies and other parents. Don't select an attorney based only on someone's recommendation. Be sure to interview and ask questions before you decide. There are several resources that can help get you started:
- The Arc Hamilton County will send you an updated list of lawyers in the local area that have received training in special needs trusts and future planning. The Arc has a listing of local chapters.
- PLAN of Southwest Ohio, Inc. can provide a referral to an attorney experienced in developing special needs trusts.
- Academy of Special Needs Planners provides information and links to member attorneys in each state.
- Special Needs Alliance is a national organization of attorneys dedicated to the practice of disability and public benefits law. Individuals with disabilities and their families can be connected with nearby attorneys who specialize in disability law. They can provide assistance with estate and future planning, special needs trusts, guardianship and Medicaid and SSI eligibility.
While Cincinnati Children's does not endorse specific attorneys, several Cincinnati area attorneys include general estate planning and special needs trusts information on their web sites:
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If your questions are not fully answered by our Special Needs Resource Directory and its links, please contact us via email.
Rev. 5/09
