Frontline Initiative Aging

Looking ahead and planning for the future can be a difficult and frequently impossible thing for stressed parents, siblings, or other people who are involved in the life of a person with a disability to do. Between the IEPs and ISPs, as the mother of an adult son with a disability, I feel as though I have done enough planning for three children! Sometimes just thinking beyond today is too difficult. And yet, as a parent, if I want the best for our son, finding the time and energy to look ahead and plan is exactly what is needed to assure that he will be able to live life to the fullest.

The planning process is referred to as “life planning” and involves asking questions such as, “When should we start planning my child’s future?” “Who can help us and what are the available resources?” “What happens to our child, sibling, or loved one when we are no longer able to care for him or her?” “Who will look out for our loved one’s interests?” These questions are all part of the life planning process that will eventually result in several written plans that spell out the wishes of the individual and the wishes of the parent(s), siblings, and/or those who care about the individual. While these questions can be anxiety-producing, by getting involved with life planning at an early stage, parents and other caring individuals can prevent some of the stress that often accompanies caring for an individual with a disability.

The Components of Life Planning

The Life Plan

This component describes dreams, desires, and wishes for a loved one and is often referred to as a Letter of Intent, though it is often longer than a typical letter. The Letter of Intent does not need to involve a lawyer, and should include the individual’s history, behavioral needs, social activities, medical care, residential care needs, and emergency instructions (in the event that the parent is incapacitated), religious activities and/or preferences, and final arrangements. It should also include any specific information about the individual that might not be readily apparent, such as the person’s love of certain foods, or that he or she likes to go to sleep to certain music. The more specific and detailed the Letter of Intent, the more information conveyed to those who will care for the family member. The Letter of Intent is not a legal document and does not compel anyone to follow its intent. It is, however, a way to communicate with future support providers the wishes of those who care about the individual. Parents should sign and date this document, share it with siblings or the person’s successor, make a copy, and keep the original in a safe place.

The Legal Plan

This component includes wills and trusts and requires the services of an attorney who is knowledgeable in these matters, preferably a professional who specializes in planning for people with disabilities. In estate planning, wills frequently exclude the person with a disability and specify that his or her portion should go to a supplemental needs trust. The supplemental needs trust is frequently set up as a living trust, as opposed to a testamentary trust, which take effect when the bearer passes away. The living trust is irrevocable, which means the funds can only be used for the person with the disability. This type of trust is intended to provide the individual with additional funding beyond the basic needs funding usually provided by programs such as Social Security Income, Social Security Disability Income, and Medicaid. The initial trustee for the supplemental needs trust is often a parent or sibling. Assets that are placed in a supplemental needs trust do not count as assets for the person with a disability and therefore do not disqualify him or her from receiving governmental benefits. In addition to setting up a supplemental needs trust, Power of Attorney and Health Care Directive documents should be discussed, planned for, and shared with siblings or guardian successors.

The Funding or Financial Plan

The financial plan addresses the financial aspect of funding the life plan. This part of life planning involves assessing how much it will cost to provide the loved one with developmental disability or the quality of life that was described for them in the Letter of Intent. To determine this, parents need to figure out how much is spent on items not provided through governmental programs, which might include such things as a new television, vacations, new clothes, and other items that promote enjoyment in their loved one’s lifetime. By keeping a record of what is spent on items such as these, it is possible to figure out how much money is necessary to assure a supplemental income for the individual’s life. Knowing that your loved one can continue with the quality of life that you have always provided can be very reassuring and comforting.

The Implementation Plan

This aspect of life planning describes how the life plan will be implemented and managed. The three parts that are important in plan implementation include —

1. A life plan portfolio (often a binder) containing all important information and documents that concern your loved one with a disability. Documents that should go into this binder include —
   1. Letter of intent
   2. Social Security card
   3. Guardianship or Conservatorship papers
   4. Medicaid application
   5. Case manager’s card
   6. A photograph of the person
   7. Birth certificate
   8. Health card
   9. Information on government agencies
   10. Name and phone number of contacts at agencies
   11. Admission papers for schools and camps
   12. Individual Education Plan/ Individual Service Plan/Life Plans
   13. Other evaluations and plans
   14. Additional family items might include —
       • Copies of the caretakers’ or parents’ wills
       • Assets in the trust
       • Social Security card(s)
       • Copies of supplemental needs trust
       • Copies of most recent tax return
       • Birth, marriage, and divorce document
2. A meeting with your successors before the planning process is completed and then again afterward when the plan is in place. Meeting prior to finishing the life plan informs the successor(s) of their responsibilities and offers them the chance to ask questions before agreeing to the plan. Once the plan is complete, meet again with the successors to let them know where the plan will be kept along with any other pertinent information.
3. Periodic reviews should be planned as part of the management process to ensure that, in the eventuality of any changes, the plan is kept current and the objectives of the life plan and the needs of the individual are being met.

When is a Good Time to Start the Life Planning Process Started?

Planners often recommend getting a plan in place by the time the child turns 18 because it is at this age that he or she becomes a legal adult and therefore eligible for many important governmental benefits including Social Security and Medical Assistance. If a loved one has too many assets or savings in his or her name, he or she could be disqualified from receiving the governmental benefits. It is also at this age that the son or daughter becomes his or her own legal guardian and can make legal decisions without the guidance of a concerned loved one.

No one can predict the future — we can only prepare for it. People with a loved one with developmental disabilities should be aware of the importance and necessity of developing a life plan for their loved one. Direct Support Professionals (DSPs) can also support life planning by asking caregivers, parents, or siblings if they have considered what will happen when they are no longer able to look after their loved one or if they have thought about a supplemental needs trust. It is critical for DSPs to know what plan are in place to support the people who receive services in understanding and grieving the loss of their loved one.

While the stress of simply getting through each day is often all we can manage, life planning provides a golden opportunity to look ahead and anticipate the special needs of the loved with a disability.