PRIMER ON SPECIAL NEEDS PLANNING
As reprinted from The Arc of the United States’

Only work with knowledge professionals that have an expertise in special needs planning: Specialization is becoming the norm in most professions. A person with a cardiac problem sees a cardiologist. A person purchasing a home sees a real estate attorney. Effective special needs planning requires a high degree of specialized knowledge and expertise. Generalists typically do not possess the knowledge or expertise necessary to provide comprehensive planning services or the ability to keep pace with future law changes. Special needs planning professionals that have an expertise in their planning approach, should be able to obtain additional resources and services for families, and provide them with updated information on recent law changes or innovations in the field.

Learn about how the special needs or supplementary needs trust preserve government benefit eligibility: Needs based government programs such as SSI and Medicaid do not allow persons with disabilities to have more than $2,000 in assets. As a result, many attorneys have told families to disinherit their children with special needs. However, there is no longer any reason to disinherit children with special needs or to leave money to siblings or other relatives on their behalf. Morally obligated gifts can be attached through divorce, bankruptcy, or lawsuit. The special needs trust is the only planning technique that allows families to preserve government benefit eligibility. If drafted correctly, special needs trust assets can only be used to supplement government benefits and can never supplant government benefits.

Prepare, Review and Revise legal documents: All families should have legal documents such as wills, trusts, power of attorney and health care proxies. All of these documents need to be reviewed and revised to make certain that they will work successfully in special needs planning situations. Improperly drafted documents and worded documents will cause the loss of important government benefits such as SSI and Medicaid.

Review and revise financial assets: All family held assets need to be reviewed to make certain that distributions made during life or upon death will not cause the loss of government benefits. Certain assets held such as custodian accounts or as tenants in common, UGMA, or UTMA accounts may need to be shifted, re-titled, or re-configured to preserve government benefit eligibility. Care should be taken to change primary or contingent beneficiary designations on all group term insurance plans, life insurance policies, 401(k), tax sheltered annuities, retirement plans, etc. Persons with special needs should not be named as beneficiaries. Rather, money should be left to the special needs trust.

Develop a clearer vision of how you want your child to live if both parents are no longer around: Families need to develop a clear vision of their hopes, dreams, and aspirations that they want for their loved one after they are gone. Subsequent planning efforts and funding should impact desired lifestyle, residence, and job situation based on this vision and other family objectives.

Develop a precise understanding of your child’s diagnosis, prognosis, functional skill level, earning potential, and abilities: A clear and definitive diagnosis is a basic starting point. A definitive diagnosis can help lead to an accurate and realistic assessment of your child’s functional skill level and eventual prognosis. A realistic prognosis can be developed to help lay the foundation for parent expectations, which is critical to engage in proper long-term planning and funding.

Identify a future guardian, conservator or trustee for your child: The choice of guardian, conservator, or trustee is critical to the future care and well-being of children with special needs, especially after both parents are gone. Families need to give careful thought as to who will raise their child or manage money on their behalf. Emotional, personal, and suitability factors need to be visited and re-visited frequently when children with special needs are involved. The laws pertaining to guardianship, conservatorship, and trustees also vary from state to state. It is also very important that trustees of special needs trusts be very knowledgeable, skilled, and extremely careful in managing fund assets and distributions, so that government benefit eligibility is preserved and maintained.

Develop a written Letter of Intent that will assist future caregivers: The Letter of intent serves as a blueprint that provides valuable information in the daily life of your child, in the event that a new caregiver had to step in and manage your child’s day-to-day activities. In addition to vital information regarding your child’s physical and mental status, the Letter of Intent should include your child’s likes, dislikes, hobbies, recreational and social preferences, food allergies, medications, physicians, medical history, as well as your hopes, dreams, wishes, and aspirations for his or her future. The Letter of Intent should also detail your thoughts on a variety of matters such as dating, religion, sex, future living plans, and academic- and job-readiness skills. While the Letter of Intent is not a legal document, it can function as a daily blueprint for future caregivers.

Develop plans to maximize community-based supports and available benefits: Every special needs plan should seek to maximize community-based resources. Seek to identify social, recreational, vocational and other community-based resources that will enhance, empower, and lead to an increased sense of fulfillment for your child. Your plans should seek to fully integrate you child into his/her local community to the fullest extent possible.

Coordinate future planning efforts with all children, family members, and relatives: It is critical that special needs planning details be shared with all family members. It is important to eliminate surprise bequests, from well-intentioned grandparents, aunts and uncles, brother and sisters, etc., which could jeopardize government benefits. Money should never be left to persons with disabilities, but rather to their special needs trust.

Provide funding to provide lifetime care and quality of life: A special needs trust that has no money earmarked to fund it is worthless. Plans must be undertaken to make certain that the trust is funded with assets to meet supplemental needs that provide for quality lifetime care and quality of life.

MetDESK Expertise: MetLife’s Division of Estate Planning for Special Kids, MetDESK is committed to helping families through the maze of legal and financial planning for the future of a child or dependent with special needs. To contact a MetDESK Specialist in your local community call 1-877-MetDESK (1-877-638-3375) or visit the MetDESK web site located at www.metlife.com/desk to request a meeting by filling out the on-line appointment maker. As a division of MetLife Financial Services, MetDESK was established to extend MetLife’s traditional commitment to public service to families of children with special needs.