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Caring for special needs requires special planning

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Brent Bush Brent Bush

Brent Bush is an attorney in Wheeling, West Virginia and is board president of Russell Nebsitt Services Inc.

Individuals and families that have special planning needs must consider the implications of these factors in the development of their disability and estate plans. They should seek the services of legal and financial consultants who can assist them with a comprehensive evaluation of their special planning needs, in the development of their unique planning goals and objectives, and in the determination of financial resources necessary to achieve their goals. 

Technical competence as well as profound understanding of social services and support are essential. Such consultants should have an understanding of the complexities accessing and maintaining public benefits as well as the lifetime sustainability of a family's plan.

It is never too early to develop such plans, and as the age of majority approaches for a person who has some degree of disability, the need for a family to complete this planning becomes more important. Special needs planning is unique in that it is often not simply about legal things. 

Comprehensive planning would include decision points such as: 

  • reviewing funding for services,
  • reviewing guardianship issues,
  • understanding the maze of government programs and eligibility,
  • planning for transitioning and residential living,
  • preparing a letter of intent and
  • implementing and carrying out a reminder program for estate, risk management and financial planning for the benefit of other beneficiaries.

Central to special needs planning is the development of a Special Needs Trust by which ‘special needs' (those not covered by other public benefits) can be addressed, as well assuring the optimization of public benefits for medical, financial, residential or therapeutic support. A Special Needs Trust will also provide for the ultimate support of non-disabled beneficiaries. 

West Virginia intestacy laws do not allow special treatment for distributions to persons who have a disability or are receiving public benefits that are means tested, resulting, by operation of law, in a receipt of assets that will terminate, or interrupt, essential governmental support. Further, only by advance planning can others be empowered to make personal and financial decisions for a person under a disability. 

Special needs planning permits families to qualify, and quantify, the quality of life they desire for a child with some level of disability. The price of the process is far outweighed by the value of the peace-of-mind derived from the planning.

A special needs planner will conduct a series of meetings to identify and prioritize a family's goals and objectives; the goals and objectives of the special needs individual; analyze the present financial situation with respect to both of these goals, review family resources, legal documents, investments, insurance and other related issues. From that process, there will be a plan created with recommendations and steps to maximize and protect family and government resources. If the recommendations are acceptable to the family, the planner will work with the family to implement the recommendations and set up periodic reviews.

Reasons for planning

  • Nearly 54 million Americans cope with special needs and the rising associated expenses, according to the National Organization on Disability (2007).
  • Nearly one-fifth of all Americans — more than 54 million men, women and children — have a physical, sensory or intellectual disability, according to the National Organization on Disability (2007).

More than 41 million Americans, or almost 15 percent of the population age 5 and older, have some type of disability; according to 2007 Census survey data. Some 6.2 percent of children ages 5 to 15, or 2.8 million kids, have disabilities, the U.S. Census Bureau found.

  • The Census Bureau says about 10 percent of Americans between the ages of 16 and 64 suffer some form of physical, mental or emotional impairment. Many of them are outliving their parents thanks to improved care medical technology.

The following statistics are from "Disability and American Families: 2000", U.S. Census Bureau July 2005 Report:

  • One out of nine children under the age of 18 in the U.S. today receive special education services;
  • Out of 72.3 million families included in the 2000 Census, about two in every seven reported having at least one member with a disability;
  • 20.9 million families have members with a disability;
  • Of the 20.9 million families reporting at least one member with a disability, 5.5 percent have both adults and children with a disability;
  • One in every 26 American families reported raising children with a disability;
  • One in every three families with a female householder with no husband present reported members with a disability; and
  • An estimated 2.8 million families, 1.3 percent, reported raising two or more children with a disability.

The following statistics are from the MetLife's survey "The Torn Security Blanket: Children with Special Needs and the Planning gap":

  • Eighty-eight percent of parents who have children with special needs have not set up a trust to preserve eligibility for benefits such as Medicaid and Supplemental Social Security; and
  • Eighty-four percent have not written a letter of intent outlining an agreement for the future care of the child.


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