Monarch Center for Autism Cleveland Ohio

The Planning Process

The planning process281 that financial planner Barton Stevens, ChLAP, recommends addresses four key issues affecting the life of the person with special needs. They are:

  1. Lifestyle
  2. Legal
  3. Financial
  4. Government Benefits


Lifestyle planning is where the family records what they want for the future of their loved one. This information is recorded in a document called the "Letter of Intent." Although not a legal document, it is as important as a Will and Special Needs Trust. Lifestyle issues require decisions regarding where the person will live, continued education programs, employment, social activities, religious affiliation, medical care, behavior management, advocacy and/or guardianship, trustees, and final arrangements.

In addition, detailed instructions are provided for assisting the person with the typical activities of daily living, such as bathing, dressing, feeding, and toileting. Perhaps the person has a special way of communicating that only the immediate family knows and understands. It is important that this information be included. Rather than write hundreds or thousands of words describing how to do these things, it is recommended that families videotape them performing the activities of daily living and communicating in different social settings, such as the home, school, day care center, and so on.

Imagine how much easier and less traumatic it will be for the person with special needs and the care providers if they have detailed instructions immediately available to them rather than having to figure things out on their own. What could take weeks or months to adjust to could be shortened to a few days. The ultimate goal is to make the transition from parental care to independent living, residency in a group home, or moving in with other family members as easy as possible, bearing in mind the comfort and security of the person.


Legal planning provides for the family to state their wishes as to the distribution of their assets and appointing executors to settle their estate. In conjunction with this, a trust is usually executed to provide professional money management (trustees, guardians), maintain government benefits, and protect the assets left for the individual.

The "Irrevocable" Special Needs Trust is the most commonly used document to provide supplemental funds for the exclusive benefit of the person with a disability. The assets are not in the name of the person, so they will not cause the loss of SSI (Supplemental Security Income) health care benefits. This Trust has proven invaluable to families regardless of the size of their estate or the amount of assets they are leaving.


Financial planning is used to determine the supplemental needs of the person. First, a monthly budget is established based on today's needs while projecting for the future. Then, by using a reasonable rate of return on principal, the family identifies how much money is needed to fund the trust. In addition, the life expectancy of the person must be considered and then the need projected into the future using an inflation factor.

Once this is done, the family must now identify the resources to be used to fund the trust. They may include stocks, mutual funds, IRAs, 401(k)s, real estate, life insurance, etc. Professional management for investing the assets may be done by the Trustee, or the Trustee may hire advisors.

Government Benefits

Government entitlements play a key role in the lives of many persons with special needs by providing cash and health care benefits under SSI (Supplemental Security Income), SSDI (Social Security Disability Insurance), Medicaid, and Medicare. A basic understanding of federal and state entitlement programs is essential in order to be sure that the person gets all that they are qualified to receive and that assets received from family members through gifts, inheritance, and litigation do not result in the disqualification and termination of government benefits or the government claiming reimbursement for benefits provided from assets received by the person.

It should be clear that each of these issues is interrelated and should be coordinated in the planning process. Those persons who provide advice in one particular area should be made cognizant of what others are doing. This emphasizes the importance of an organized plan.

The result of a comprehensive plan should provide lifetime supervision and care; maintain government benefits; provide supplementary funds to help ensure a comfortable lifestyle; offer management of funds; provide dignified final arrangements; and avoid family conflict.


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