How To Plan For a Family Member With a Disability: An Integrative Approach

Staff Writer
Baystateparent Magazine

As families plan the future for a son, daughter, or even a sibling with a disability, the considerations of what steps they need to take now can be a daunting challenge. Families who have a relative with a significant disability face the uncertainty of future government services and benefits, legal jargon, and often-conflicting professional advice.   

 An integrative approach to special needs planning combines legal, financial, and person-centered planning tools to create a comprehensive lifetime plan to support a family member with a disability.

Person-Centered Planning

  A person-centered plan must involve those who care about and know well the individual and family personally — the network of support. It is best to have a neutral and trained facilitator guide the group in developing a vision focusing on the gifts, choices, and preferences of the individual. A clear action plan serves as a road map to enriching the person’s future and can be revised as often as necessary. Although there are many kinds of person-centered planning tools, these components are central to all:

• Understanding of the individual and family 

• Identification of a personal network of support 

• Vision for the future 

• Plan to implement the vision 

• Review and revision of the plan on a regular basis 

When I serve as a trustee of a supplemental needs trust, a person-centered plan is an invaluable tool when making decisions about the distribution of trust assets on the beneficiary’s behalf. This tool helps ensure that the supplemental needs trust is being administered in a fashion consistent with the values and needs of the beneficiary and the beneficiary’s family. 

Special Needs Estate Planning

  The role of a special needs estate-planning attorney is to develop the appropriate legal documents for the family. Special needs estate planning is an advanced form of estate planning that incorporates traditional concerns (e.g., how the estate will be divided and distributed, reduction of estate tax, probate court avoidance strategies, asset preservation strategies, etc.) with the objective of supporting a family member with a disability following the passing of the parents and/or primary family care providers.  

  A supplemental needs trust is a cornerstone of a special needs estate plan. It can ensure that a family member with a disability can maintain his or her eligibility for government benefits such as MassHealth, supplemental security income, and other means-tested benefits in the future. Families are then faced with how to best use the family assets for the benefit of their family member with a disability after the death of both parents. Families are concerned that the family assets not be wasted and there are also significant concerns about those assets being stolen or misused at some point in the future. A fundamental concern is to ensure that future decisions are made by informed and competent individuals who have the best interest of their relative in mind at all times. 

Financial Planning

  A necessary element of a future plan for an individual with a disability is the capacity to supplement available government benefits with private funds. Depending solely on government funds is a highly risky proposition given the gaps and unpredictability of government funding. More importantly, private funds set aside through insurance, annuities, investments, and other resources provide empowerment and a quality of life not typically available to one totally dependent on government benefits. A future plan without a realistic strategy for funding future services through private funds is really not a plan at all. Instead, it’s simply a wish list with no real hope of becoming a reality. All families who are engaged in the planning process must integrate the person-centered planning process and their trust and estate planning with a sound financial plan. 

  Through proper planning, the future for their family member with a disability can be viewed with greater confidence, hope, and security.

The Special Needs Planning Practice Group is chaired by attorney Frederick M. Misilo Jr.. With over twenty years of experience practicing law, Mr. Misilo is a frequent lecturer on estate planning, special needs planning and elder law.