Planning for families with disabled children is an emerging legal specialty bringing new hope to people in need.

Many of us have a relative, friend or colleague who is saddled with an incapacitating physical, mental or developmental disability.   We all know families with a child who suffers from autism spectrum disorder, Downs Syndrome, or from a broad range of other genetic, mental or physical disabilities.

Even today, however, there are very few competent professional advisers available to help plan for the “special needs” of disabled persons. Thus, many disheartened families had limited options to provide adequate care for disabled relatives after their primary caregivers died or grew too old and infirm to provide the necessary care.

Hopeful Change

Thankfully, many more professionals are now directing their skills toward planning for the disabled than ever before.  With attorneys joining forces alongside an array of allied professionals, such as life-care planners, rehabilitation specialists, support groups, and legislative advocates, there is new hope. Together, these professionals provide ready access to valuable resources for people challenged by incapacitating disabilities.

The Protection of a Trust

A Special Needs Trust (“SNT”) can be established  to address the unique circumstances of each family faced with the dilemma of securing the future of a disabled family member.  The SNT can allow the disabled beneficiary to become and remain eligible for need-based government benefits, such as Medicaid and Supplemental Security Income, which often serve as a significant source of funding for the disabled beneficiary’s special needs.

These government benefits are not just for the poor. Federal and state laws permit, and even encourage, SNT planning which maximizes the use of all available resources, both private and governmental, in order to provide fully for the needs of the disabled. For persons of limited means, government programs may constitute the primary source of funding for their current and future needs. Surprisingly, government assistance is often also available to families with more significant resources to help meet certain basic needs of their disabled relatives.

These families can then utilize their personal resources to provide for non-basic needs and quality of life enhancements. Thus, the disabled person first taps into any government benefits to which he or she is entitled, and then the family’s private assets serve as a secondary source of support to supplement — not supplant — such government benefits. Families from all economic backgrounds hail this public-private partnership as an effective means of funding the special needs of disabled persons. The cornerstone of this partnership is the SNT.

Flexible and Comprehensive Care

“Special needs” is a broad term encompassing not only medical and health-care services and products which may benefit a disabled Beneficiary, but also a wide range of related services and “quality of life” options which may be tailored to the particular circumstances of the Beneficiary. For example, once a Beneficiary’s medical needs are adequately provided for, the SNT may help fund the cost of additional service providers, such as domestic and personal assistants to aid the Beneficiary with the “activities of daily living,” or attendant and respite care to give the Beneficiary’s primary caregiver a much needed break. The SNT can purchase a customized, accessible van or other vehicle appropriate for the Beneficiary’s circumstances, and pay the cost of the maintenance, insurance and periodic replacement of the vehicle. Similarly, SNT assets can be used to pay for beneficial living arrangements, including additions or renovations to the Beneficiary’s residence to render it accessible, the cost of a communal or assisted-living arrangement, or a “luxury” skilled nursing facility.

Other common SNT disbursements include funds for: – appropriate recreational and vocational activities; – hobbies and vacations; – educational and training opportunities; – augmentative communication equipment; – professional services for the Beneficiary, including attorneys, accountants and claims processors; and – procurement and maintenance of a pet or service animal for the Beneficiary.

Permissible disbursements from a SNT are limited only by the creativity of the drafting attorney and the overriding requirement that the Beneficiary derive the primary benefit there from.

Establishing and Funding a Special Needs Trust

The SNT may be established under a Last Will and Testament, or inter vivos (i.e., during life). It may be funded by a third party (such as a parent or other relative) or funded with the assets of the Beneficiary. If the SNT is “self-settled” — funded with the Beneficiary’s own assets — federal law requires that the SNT must provide for the reimbursement of Medicaid (or other government medical providers) at the death of the Beneficiary from the property then remaining in the SNT (if any), up to the full amount of medical benefits previously paid on behalf of the Beneficiary. Only after this “payback” requirement is fulfilled may other persons — such as the descendants or siblings of the deceased Beneficiary — share in any remaining Trust property.

Identifying Qualified Legal Specialists

Even though public demand for SNT planning is clearly on the rise, and increasing numbers of lawyers are choosing to practice in this area, many estate planning attorneys remain unfamiliar with the concept and operation of SNTs. As a result, general practitioners often choose to associate as “co-counsel” an attorney who is proficient in SNT planning when such specialized expertise is needed. State Bar associations may serve as a good starting point for identifying attorneys who have particular expertise in SNT planning. Professional organizations, such as the National Academy of Elder Law Attorneys, may also be of assistance in identifying local attorneys who specialize in this emerging area of law.