Planning for Families Supporting Adults with Lifelong Disabilities
Parents who take time to plan while they still have the health, time, and energy to do so gain not only great peace of mind for themselves but also show care for the rest of their family. In these situations, planning is more than just a will and perhaps a special needs trust. It involves identifying relevant agencies and working with them. It also involves finding agencies within the community where the adult child will be living when the parent(s) die in order to ensure that proper supports are in place. It includes the involvement of significant others such as siblings, other family members, family friends, and professionals such a financial planner, attorney, and social worker.
Within the general population, few parents actually plan for their own aging and care. An AARP survey indicates that nearly 70 percent of aging parents fail to discuss issues related to aging with their adult children. It is therefore no surprise that so few families supporting adults with lifelong disabilities have had meaningful discussions concerning viable long-term plans for those who will need lifetime supports. Aging parents owe it to themselves, to their other adult children, and especially to the adult child challenged with lifelong disabilities, to begin the process of making plans to address their own long-term care needs as well as care for the family member in need of long-term supports.
While opening a dialogue with other family members about long-term care plans is important, it is important to remember that it is impossible to resolve this issue in a single talk. This planning is an ongoing process and has to be reviewed every few years. Life is filled with the unexpected and a plan has to be checked to be sure it realistically reflects everyone’s needs and abilities, not just the needs of the adult child with a disability. The needs and circumstances of siblings and other family members who may be called upon to play a role as advocate, caregiver, guardian, trustee, or in some other meaningful support role must be reviewed as their life situations may have changed since “the plan” was first put into place.
Hope for the Best, Plan for the Worst
When developing a life-care plan for the family member needing lifelong care, parents need to “hope for the best, but prepare for the worst.” Parents will often say, “I’m not worried because I know my daughter will take her brother in and care for him.” They may assume this without ever discussing it with their other child. Perhaps they have shared their expectations, but that child does not express his or her concern about making a lifetime commitment for fear of angering or upsetting the parent(s). Relying on adult siblings to fill in as caregivers is often not realistic nor is it often in the best interest of the adult who may desire independence from his or her family but may need help in gaining independence. It is important for adult children to be honest with their parents about what they are prepared to do for their sibling.
Even for those families whose adult child prefers to live with a sibling, and the sibling is willing to assume responsibility for lifetime care, parents need to plan for an alternate living arrangement. Circumstances change. For example, the designated care giver may experience an illness or may predecease the parents.
In other situations, the care needs of the adult child may suddenly change, so that it becomes difficult for the designated care giver to care for him. If he needs to be placed in a nursing home, a properly planned special needs trust can provide the necessary funds.
Include Everyone in the Process
The discussion can begin with the topic of aging ¬— theirs, the adult child with special needs, as well as the other siblings — as soon as possible with the whole family. Realistic and successful planning involves the notion that the person with needs likely has preferences about where to live and with whom. Parents need to ask their children and other family members for their advice and wishes regarding future roles and responsibilities. A plan made in the absence of input from all of the key players is doomed to failure. While this is delicate, diplomatic honesty is key.
Elder and Special Needs Law attorneys should be able to facilitate these discussions. We are not only draftsman, we are also planners. We can spot issues, make suggestions based on the experience of other clients, and recommend other professionals whose views and services may be helpful. Parents may also want to meet with a financial planner who can advise them on how to best fund the special needs trust. A financial planner can also assist parents in changing the beneficiary designations on non-probate assets such as IRAs, retirement funds, life insurance policies, etc., so that the share for the family member with lifelong disabilities is directed to a special needs trust.
All the talk and planning preserves little, of course, if the family does not have properly drafted legal documents which memorialize and create the means for these desires to be realized. Families need to discuss with counsel their need for:
1. A properly drafted will that provides for a testamentary special needs trust.
2. A free-standing special needs or supplemental needs trust.
3. Powers of attorney for health care and property for the parents and grandparents. The power of attorney for property should include Medicaid gifting powers so that if the elderly parent or grandparent enters a nursing home, assets can be preserved for the benefit of a child or grandchild who is disabled as defined by the Social Security Act. (Note: There is no five-year look back period for transfers to a qualified trust for a special needs child. This enables the elderly parent or grandparent to qualify for Medicaid to pay for his or her long-term nursing home and preserves the net worth of the parent or grandparent for the benefit of the adult child challenged with disabilities.)
4. Guardianship or customized powers of attorney for the family member with a disability. If the family member does not need a guardian, it is recommended that he or she should sign durable powers of attorney for health care and property designating a family member or friend as agent. This is important for all persons over the age of 18 but especially critical for persons with lifelong care needs who often need an advocate to assist them with navigating the health and human services care systems.
Letter of Direction
In addition to the above documents, if the adult child is nonverbal or unable to communicate wishes, parents should write a letter of direction. The letter of direction is an informal document that provides future caregivers and significant others with important information that provides continuity for the subject of the letter of direction. A letter of direction also enables parents to memorialize their hopes, dreams, and wishes for their family member. This last section often provides guidance for the persons who assume the caregiving role or who are trustees of a special needs trust. A letter of direction should be reviewed no less than once per year to be sure it adequately reflects the current needs and wishes.
A typical letter of direction should include:
• the names, addresses, phone numbers, and relationships of all significant family members;
• a list of significant others such as respite care workers, social worker, job coach, and neighbors who may be of assistance as well as how to contact these individuals;
• the location of important documents such as wills, trust, birth certificates, guardianship order or POAs, insurance policies, deeds and titles to properties, as well as burial plans if any; and
• updated information about the medical history of family members including a list of names, addresses, phone numbers, and hospital ID numbers for all the doctors and other therapists who treat the individual.
Keep Documents in a Safe Place
Parents should leave written information regarding financial assets, social security numbers, and other confidential matters in a place of safe keeping so that assets are not lost. We must urge our clients to make sure that pension benefits, insurance policies, and other assets are not lost because the parent did not inform their future executor or successor trustee of the existence of these assets.
Making sure their financial documents are in order, that their adult child or family member is receiving all the benefits to which he or she is entitled, applying to the relevant social service agencies for life-time supports, working with agencies and family members to develop a plan for future care and supports, and memorializing the family’s wishes in a current letter of direction will enable parents and persons with long-term disabilities to sleep better at night. A parent who has completed the above steps has the peace of mind of knowing they have done what they could for their son or daughter challenged with a lifelong disability. And the attorney who has advised them of the need for this analysis and prepared thoughtful and customized documents provides a service not only to the parents and adult child with care needs, but the whole family.
Thanks toTheresa M. Varnet, Esq.