Fall 2008

Adults With Disabilities — Who Will Care for Them?
By Mary Katherine Bagnal, MSW, CMC, RG
Aging Well
Vol. 1 No. 4 P. 32

Parents of adult children with physical or mental disabilities need to take steps to ensure that their children’s needs are met when they can no longer provide the specialized care required.

As we age, each of us should plan for our retirement, our own possible long-term care needs and, eventually, our death. This planning process usually begins with legal documents designed to express our wishes and designate trusted individuals to carry out those wishes. These choices are usually expressed in a will, a healthcare power of attorney, and a durable power of attorney for financial matters.

These documents and the instructions contained therein take on even more importance for those older adults with adult children with physical or developmental disabilities since it is necessary to make additional decisions. Such decisions ensure that an elder’s desires and wishes for an adult child’s care are not only expressed but also supported through legal documents.

Nine years ago, I unexpectedly found myself hiring an attorney to handle a number of legal issues that arose when my oldest son was in an automobile accident. He was in a coma for three weeks and when he regained consciousness, his injuries had compromised his cognitive abilities and his judgment, resulting in directional deficiencies that made it difficult for him to move from room to room without feeling lost. My son had no healthcare power of attorney and in order for him to receive additional medical care and therapy at a rehabilitation center in Texas, his father and I had to obtain a guardianship through the probate court. The guardianship allowed us to advocate for his medical needs, housing, educational considerations, and direct services that supported his recovery process. Since he also had assets in his name, if he needed to qualify for Medicaid, it would have been necessary to establish a special needs trust for him.

Additionally, my attorney recommended that I revise my estate planning documents so that any part of my estate that would have passed outright to my son would now pass to a supplemental needs trust for his benefit. The purpose of such a trust is to set aside funds that can be used for his benefit while still allowing him to qualify for Medicaid if necessary, according to Franchelle C. Millender, an elder law attorney certified by the National Elder Law Foundation and a member of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys.

Planning Ahead
As a parent or a relative of an adult son or daughter with disabilities, clients may want to ensure that their child receives certain benefits upon the client’s death without jeopardizing the child’s eligibility for government programs such as Supplemental Security Income and Medicaid. More people are utilizing supplemental needs trusts in their estate plans to accomplish this goal. The idea is that the funds held in the trust should be used to supplement, not supplant, government assistance.

Depending on the laws of the state in which you live, this can be done in one of two ways. One is to give the trustee total discretion as to how to use the assets, taking into consideration possible disqualifications. The other is to direct that the trustee provide only for specified expenditures, excluding food and shelter. Supplemental needs can cover a broad spectrum of goods and services for an adult with disabilities depending on the definition used within the trust document. Examples of items that could be provided include special equipment, furniture, clothing, computers, and televisions. Services include dental, educational, special training, care management, recreation, travel, and entertainment.

Because elders can establish the terms of the trust, it can be extremely flexible and can include provisions that are important for providing the highest quality of life for the adult with disabilities. As the individual creating and funding the trust, an elder may designate not only the items and services he or she wants the trust to provide, but also the individual or corporation that will act as trustee. If an elder chooses a corporate trustee to handle the investment and disbursement of funds, he or she may also include a provision that the trustee consult with one or more designated family members regarding the needs of the beneficiary with disabilities.

Utilize Resources
As the years pass, I annually review my estate plan and make changes that will better support my son. This process also allows him to express to me and his siblings his needs and desires. It’s important not to make assumptions. If the adult son or daughter with disabilities is capable of expressing an opinion, your client should engage him or her in the process of planning for the time when the adult parent is no longer here.

Over the past nine years, I have seen other families face similar issues. How do we, as parents, create a care plan for that time when we may no longer be able to provide direct care for our adult children with disabilities? To effectively answer this question, your clients must utilize all their resources.

Encourage them to try to find a local support group or assemble other parents of children with disabilities and create their own. It is a great forum for the exchange of information, and parents will likely find ways to empower themselves and other family members. Also, they should make use of The National Family Caregiver Support Program, which is funded through the Older Americans Act. The program’s goal is to offer services to caregivers, including information about available services, assistance with accessing support services, individual counseling, respite care, and supplemental services.

Area Agencies on Aging were established in 1973 under the Older Americans Act and provide a wide range of options to Americans aged 60 and older in every state. These agencies may be useful for providing information and options available for home- and community-based services and living arrangements that would allow an adult son or daughter with disabilities to remain in the community for as long as possible.

Another resource, if available in the area, is the Planned Lifetime Assistance Network, which helps families develop a future care plan, establishes resources, and designates the person or persons who will oversee the plan’s implementation. While these are only a few sources of potential assistance, there are many other programs available.

Growing Numbers
It is estimated that 641,000 adults aged 60 and older have developmental and intellectual disabilities (e.g., mental retardation, cerebral palsy, autism, epilepsy), and that number will double when the baby boomer generation reaches their 60s. Due to our nation’s economic status, states across the country are seeing budget cuts across the board for all services. Many states are experiencing the growth of long waiting lists for residential services. With the advancing years of the baby boomer population, older adults need to consider their options when planning for the time when they can no longer care for their adult offspring with disabilities. Estate planning is the key component to ensure that clients’ desires and wishes are legally documented through wills and trusts.

If elders have a strong desire for their children with disabilities to remain in the homes and communities with which they are most familiar, it is important that their estate plans are developed in ways that will support the adult with disabilities in the home when the parents themselves need care and even after the parents are gone. Planning may incorporate the older adult with disabilities remaining in the home with support services being provided. Work programs and adult day care programs are other options that can support the individual during the daytime and then allow him or her to return home in the evening with proper supervision. That supervision can come from several support systems such as siblings, other relatives, close family friends, or paid caregivers.

The Olmsted Act of 1999 and Title II of the federal Americans with Disabilities Act dictate that, when possible, states must place persons with disabilities in a community setting rather than in an institution. These two acts also mandate that states’ public and quasipublic (i.e., nonprofit agencies providing the same services as a public agency) agencies provide services in the most appropriate setting to meet the needs of the individual with disabilities.

Although state and federal waivers address some of the residential and care issues, they do not necessarily simulate the same care fostered by living at home with family members. With the rising number of older adults with developmental disabilities, the resources will hopefully continue to expand.

There appears to be no national indicator that shows the number of adults with disabilities over the age of 18 residing at home with their parent(s) or other family member(s) and who receive no federal or state services. Many state agencies servicing individuals with developmental disabilities (under the Mental Retardation/Related Disabilities Waiver) and the acquired disabilities from spinal cord and traumatic brain injury (under the Head and Spinal Cord Injury Waiver) are reviewing the criteria for those individuals requiring emergency placement when the responsible party (an older parent or sibling) dies and the adult with disabilities requires residential placement.

A Stitch in Time
In the absence of estate planning, the state office providing the services will frequently determine both the eligibility and the placement of the older adult with disabilities. There is no guarantee that the placement will be in the same community that the adult with disabilities has known and in which he or she has had an established support network. The move from the familiar family home to a new setting can be difficult and, at best, a major adjustment. Often, the adult with disabilities has never been adjudicated and assigned a guardian or conservator to make decisions of person or finance. If there are provisions in the parent’s will, then upon the parent’s death, the person designated as guardian can make decisions for the adult with disabilities, and the personal representative and trustee will carry out the parent’s plan for the care of the individual with disabilities as defined in the will or trust.

Parents whose adult children’s disabilities have impaired their cognitive abilities may want to consult with an elder law attorney to become familiar with state laws that address the rights of individuals with disabilities when the parents are no longer able to care for them. An elder law attorney can assist parents in learning how they can take action while they are living to ensure that the care plan they create is properly implemented and that the individuals chosen to implement the plan understand their roles and responsibilities. The elder law attorney can create legal documents that address a client’s desires and provide some peace of mind that the son or daughter with disabilities will receive the best care in consideration of the individual’s wants, needs, and desires.

The legal documents are only the beginning. Care plans can be developed with the assistance of a professional geriatric care manager. The National Association of Professional Geriatric Care Managers may be the place to start identifying professionals who can assist in developing a care plan that supports the adult with disabilities and his or her needs and desires. The care plan should be an ongoing process and changes should reflect the person’s medical needs along with social and psychological concerns.

Through contact with care managers, an older adult can identify individuals who have experience working with aging and adults with developmental disabilities. Not all care managers have the knowledge base to work with families of adults with disabilities. The awareness of the need for case management and the development of a sound care plan that is reassessed as changes occur is an important step in estate planning. Developing both a care plan and a support network with trained advocates who can work for the adult with disabilities’ needs are integral to creating some assurance that the parents’ wishes will be properly implemented at the appropriate time.

As the parent of an adult with disabilities and as the primary caregiver, your client may know best how to provide the necessary care. Encourage clients to take the time now to plan so that in the event they are no longer able to provide care, they have the assurance that all the necessary documents are in order, there is a clearly defined care plan, and their wishes and desires for their adult child’s care will be fulfilled.

— Mary Katherine Bagnal, MSW, CMC, RG, is the CEO of Senior Matters Extended Services in Columbia, SC. She is a credentialed case manager and a registered legal guardian with the National Guardianship Foundation and has served as commissioner for the South Carolina Department of Disabilities and Special Needs.

Resources

National Academy of Elder Law Attorneys: www.naela.org

Academy of Special Needs Planners: www.specialneedsplanners.com

National Association of Area Agencies on Aging: www.n4a.org