Special Needs Planning FAQs

A life care plan is a blueprint for providing economic security and services that someone with special needs will require in order to live a fulfilling life, as independently as possible. It’s necessarily an evolving document that: 

• Assesses the supports that will be required, and their cost, given the individual’s disabilities and desired lifestyle 
• Identifies government benefits for which the person may be eligible; includes a financial plan for supplementing publicly provided services, including a special needs trust (SNT) if means-tested government benefits will be required 
• Establishes guardianship or powers of attorney, if the individual will be unable to make important decisions independently 
• Includes a letter of intent containing medical, education and personal details to guide caregivers when parents have passed away.

There are many government benefits available to individuals with special needs, and they vary significantly from state to state. Some of the major programs are: 

1. Medicaid, which provides basic medical care to low-income individuals
2. Supplemental Security Income (SSI), which provides funds for food and shelter to individuals with disabilities, but is means-tested (to qualify, a person must have less than $2,000 in “countable assets”). 
3. Supplemental Nutrition Assistance Program (SNAP/Food Stamps), which has eligibility guidelines similar to SSI.
4. Social Security Disability Insurance (SSDI), which requires that participants will be unable to work for at least a year due to their disability or that their disability will result in death. Benefits are based on the individual’s income history and the number of quarters they have worked and contributed to the program.
5. Section 8 Housing, which subsidizes residential rents for families with special needs. Eligibility is based on a sliding scale that considers income and family size.

Transition planning is the process of preparing a young person with special needs for adulthood. By the age of 15, a student’s Individualized Education Plan (IEP) should begin addressing the academic, social and life skills that will be needed to become as independent as possible. Will the student live in a group residence or supportive apartment? Does he or she aspire to college or a career? What sort of social life does the family envision? To the extent possible, the individual with special needs should participate in this planning process. 

In addition, once your child reaches the age of 18 (19 or 21 in some states), he or she will be legally considered a competent adult if no other steps are taken. If your family member will continue to need assistance making decisions relating to finances, health care or education, parents should apply for guardianship or establish appropriate powers of attorney and/or a healthcare proxy so the individual’s ongoing needs will continue to be met.

When considering guardianship, it’s important to maintain a balance between an individual’s privacy and independence and the desire to protect a loved one. Because most states will automatically consider your child to be a competent adult when they reach the age of maturity, at that point, you will not be able to access an adult child’s health records or take an active role in their IEP meetings unless you take legal action. 

Applying for full guardianship, however, which affects a wide range of personal decision-making, may not be necessary, and individual circumstances should be carefully considered. A health care proxy will enable the designated agent to act on behalf of the individual with special needs without forcing the special needs person to relinquish ability to make decisions. Similarly, a financial or educational power of attorney will allow the agent to access records, participate in discussions and sign papers, while not interfering with the individual’s own decision-making rights. A special needs attorney can help you assess these confusing alternatives.

A letter of intent (LOI) summarizes, in a single document, important details that will enable guardians and trustees to care for an individual with special needs when parents are no longer able to do so. It should include medical and education history, the individual’s likes, dislikes and habits, and aspirations concerning the loved one’s future, including living arrangements, career and lifestyle. The LOI is meant to be a roadmap for caregivers and to minimize disruption during an emotional time of transition.