DelGallo.com Wealth Management Essentials - A Research Perspective on Life Planning and Monitoring For Families with Children or Dependents with Special Needs
LEONARD J. DEL GALLO JR., M.S., MPASsm, CFP®
A disability can have a dramatic impact on all family members. According to the 2003 U.S. Census, over 77 million Americans, or more than 27 percent of the U.S. Population were disabled1. It is critical for families to prepare for unforeseen events1. “Statistical studies indicate that a significant portion of the adult population provides care for chronically ill, disabled, or aged family members” 1. As result, families and planners need to review estate plans, multi-generation family issues, government benefits, trusts, and life planning issues1.
Disability is defined as the inability to do something, deprivation, or lack of physical, intellectual or emotional capacity4. Disability has been defined, at times, as an environmental problem, whereas other teachers define the term as a person-centered problem or deviation from the norm6. A person with a disability could be considered having a special need and learning to take care of this need, for a caregiver, can be like waking up in a different country without the ability to speak the language1. The learning process can take time. A Certified Financial Planner® professional, with expertise in special needs planning, can also guide families through government and community assistance programs to educate them in the fundamentals of the system1.
Family resources can be dependent on the level of family income. Families with children or dependents with disabilities are often facing poverty or severe stress on their budget2. “There are an extensive number of educational impacts related to poverty, but the one we will highlight here is the capacity of families from poverty backgrounds to attend school activities and teacher parent conferences” 2. A common misconception is that parents who are not active attending events may lack interest in their child but it may be due to the lack of financial resources, transportation, self-confidence, or inability to get time off from their job2. A family that is living in poverty is more likely to have a child who is late developing vocabulary, lower IQ, and lower reading level2. Financial planning may help families avert poverty and reduced access to resources1.
Parents are not alone in the responsibility of caring for a child or dependent with a disability. Grandparents are becoming primary caregivers across all ethnic groups and socioeconomic backgrounds5. Grandparents who are taking care of children without a parent present may be on a fixed income and 33.9% are living below the poverty level5. Planning can minimize the stress, physical health concerns, isolation, anxiety, and depression faced by many grandparents who suddenly find themselves as caregivers for a child with a disability5. Grandparents require a broad range of resource information in addition to transportation, behavior, funding, insurance, community, medical equipment, medication, housing, education, and skill development5. A well written financial plan for the family, including provisions for special needs, may prepare a caregiver to help a child or dependent with a disability. One study demonstrated that once grandparents receive specific information to answer their questions they are better able to meet the needs of their grandchildren with disabilities5. “Many grandparents have assumed parenting roles at great personal expense, filling a great family and community need; with needed supports, the grandchildren in their care, those with special needs and their typically developing siblings, will make progress and have successful lives” 5. Grandparents and siblings as primary and secondary caregivers are significant and can increase under certain economic and social conditions, while the stress and concerns can be reduced with appropriate planning and education at all stages in life5.
Financial planning can help each family member by eliminating or reducing the financial burden and legal struggles that can occur during or after a disability is discovered1. A Certified Financial Planner® professional can help by coordinating assets, documents, programs, and benefits1. Nonprofit organizations, websites, medical professionals, and other resources can also provide information to minimize economic hardship and personal exhaustion for caregivers1.
Planning for the lifetime of a child or dependent may involve; government programs, wills, trusts, guardianship plans, letters of intent, risk management techniques, and communication among family members3. “A conventional estate plan will rarely meet the needs of an individual with disabilities and may even prove to be detrimental by causing a loss of federal and state assistance, residential services, or health care benefits” 3. It is critical that families obtain and maintain eligibility for benefits to provide financial and medical stability for the disabled individual during their lifetime1.
The two major federal programs that provide monthly income to the disabled are Social Security Disability Insurance and Supplemental Security Income and receiving eligibility can be an arduous and time-consuming process1. Once a disabled individual is eligible and receives either Social Security Disability Insurance or Supplemental Security Income, they will be offered either Medicare or Medicaid which are both government offered health benefit programs1. Medicare is offered in coordination with Social Security Disability Insurance and Medicaid is offered in coordination with Supplemental Security Income1.
A will is a legal document that is created to determine how your estate is divided, identifies a guardian for minor children, and prevents the laws of the state from being the only method for dictating how your estate is distributed3. Parents are guardians of their children but once the child becomes an adult, legal status vary by state, a parent must be appointed by the court to continue as a guardian and this legal process may be executed at the local Clerk of the Court prior to a child becoming a legal adult3. If all remaining guardians were to die, the will, would identify a successor guardian for the court to consider3. Within the will, families may use exclusion, disinheritance, direct bequests, and morally obligated gifts as a few of the possible methods for estate distribution3. Many options exist to pass financial resources and families should investigate all the option available with their planning professionals before deciding on the best plan for their family3.
A trust is a flexible and efficient way to manage the assets of a family both during a lifetime and upon death3. A support trust and supplemental needs trust are two different types of trusts that are predominantly used for individuals with disabilities and can be most beneficial if created during a parent’s lifetime3. A support trust is utilized for any need of a beneficiary but is likely to disqualify an individual recipient from government benefits3. A supplemental needs trust if properly written will not disqualify an individual from government benefits and is designed to supplement, not supplant, government benefits and the trust cannot make a direct payment to the beneficiary or use trust assets for basic needs like food, clothing, and shelter3. A supplemental needs trust is used to purchase goods and services to enhance the beneficiary’s life and can be used to provide vacations, computers, companions, and other extras to enhance the quality of life for a disabled beneficiary3. A supplemental needs trust when properly written and managed is an exempt trust that requires the disabled person to have no access to the assets while funds within the trust can only be used for supplemental expenses that Social Security Income and Medicaid do not cover1.
The trustees and successor trustees are the individuals who are responsible for managing the trust and should be chosen with great care1. Corporate trustees are an option to consider when family members need help, filling a role of final successor trustee, or used in cases where no other individual or agency is suitable1. Fees and costs can vary depending on the services selected with a corporate trustee, time spent to review distributions, and other options selected to safeguard benefits1. An attorney who specializes in creating supplemental needs trusts should be used along with a Certified Financial Planner® professional who can provide appropriate resources to help the caregivers upon the death or incapacitation of the parents1.
A letter of intent is a not a legal document but an important part of the future planning for a child or dependent with a disability and a resource for a care provider3. The letter of intent will describe the history of a child, current status, hopes, dreams, goals, schedule, records, and insight into the needs of a child3. The letter may be placed on a computer to modify at least annually and should be accessible for all care providers3. A letter of intent should detail all aspects of the child’s life; history; future desires; housing/residential care; educational needs; employment history; medical care and management; behavior management; social environment; and religious environment3. There is no limit to the amount of information contained within a letter of intent and many families will provide a video to go along with any written documentation3.
1. Stone, Constance A. “In the Blink of an Eye: Special Needs Planning.” Journal of Financial Planning. Oct. 2006: Vol. 19, Iss.10: 64-74. Print.
2. Turnbull, Ann, Rud Turnbull, Michael L. Wehmeyer. Exceptional Lives Special Education in Today’s Schools. 5th ed. Ohio: Merrill Prentice Hall, 2007. Print.
3. Dixon, Beth. Planning For The Future For Your Loved One With CdLS. CdLS-USA Foundation. Cornelia de Lange Syndrome Foundation, Inc. n.d.Web. 23 Mar. 2006.
4. College for Financial Planning® University Library. “dis·ability” Merriam-Webster’s Third New International Dictionary Unabridged. N. pag. 2002. Web. 14 Jun. 2010.
5. Gallagher, Peggy A., Karen Kresak, Cheryl A. Rhodes. Perceived Needs of Grandmothers of Children With Disabilities. College for Financial Planning® University Library. ProQuest. Topics in Early Childhood Special Education. Austin: May 2010. Vol. 30, Iss.1: 56-65. Web. 14 Jun. 2010.
6. Carter, Nari, et al. Educators’ Perceptions of Collaborative Planning Processes for Students With Disabilities. College for Financial Planning® University Library. ProQuest. Preventing School Failure. Washington: Fall 2009. Vol. 54, Iss.1: 60-71. Web. 14 Jun. 2010.
Leonard J. Del Gallo Jr., Broker Associate in Connecticut & Florida
CT Managing Broker: Berkshire Hathaway HomeServices N.E. Properties
Office: 172 West Main Street
Avon, Ct. 06001
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