A child with special needs requires special planning

Staff Writer
Columbus Parent

Most parents can agree that planning for the future can be an overwhelming process causing family conflict and stress. It's even more so for parents who have a child with special needs, especially in these uncertain economic times; but proper future care planning can make all the difference in giving parents peace of mind.

According to the most recent statistics from the U.S. Census Bureau (2007), more than 41 million Americans have a disability, meaning about 15 percent of families are faced with this type of planning whether their child has a developmental disability, such as autism (the fastest growing disability in America) or Down syndrome; mental illness such as bipolar or schizophrenia; or a physical disability. A recent study published in the December issue of Pediatrics, the official journal of the American Academy of Pediatrics, describes not only how individuals with autism have problems regarding lack of access to care and unmet needs, but also how families have greater financial, employment and time burdens. Many people with disabilities require long-term care, and for the first time in history, they are living longer because of medical advances; they are even outliving their parents and guardians.

Parents who have a child with a disability need to take certain steps such as setting up a special needs trust, tapping into government benefits and making proper investment choices. Many don't know what government benefits are available to their child. Many states currently are having trouble paying social service agencies because of the economy, potentially putting more of a financial burden on parents to pay a lifetime of support for their child. The need is great than ever for parents to plan.

There are many things to consider when planning for the future: family communication, legal considerations, government benefits, transition into adulthood, residential options, employment opportunities, recreational choices, and investment solutions. Protected Tomorrows recommends an 8-step Future Care Planning Process that assesses how an individual with specials needs lives, works and plays.

Step 1: Take a candid look. This may be the first time many families address, head on, their dreams, goals and fears for their loved one with special needs, but it's worth taking some time to think through it. It's the first big step in starting to recognize the work you must do to achieve peace of mind. Make an honest appraisal of future care needs in light of the entire family's make up and financial situation.

Step 2: Create the future map. Identify all life needs including quality living, educational supports, medical needs, a wellness program, and recreational activities based upon the child's ability to support him or herself in the future. The family develops a vision of what they see for the individual in the different stages of their life. Then, quantify through various calculations that lay out a cash flow for the entire lifetime of the individual. Seek out a qualified financial planner to assist in this step if you're uncomfortable working with numbers. Refine the map each year as the individual with special needs gets older and an understanding of his/her future needs are more apparent.

Step 3: Filter the legal options. Legal considerations are an important part of the process. Certain legal documents are critical and can assist in speeding up or slowing down care for your loved one. As a parent, consider guardianship and a special needs trust as part of an estate plan. Finding an attorney who understands the specifics of drafting these types of documents is important. But before seeing an attorney, think carefully through all of the legal decisions that have to be made to make the best use of your time. Name a family member or friend as a guardian to look after your child when you are not available and/or a trustee to manage money matters if you are no longer able to. Determine how to best divide up your estate between your child with special needs and your other children.

Step 4: Capture potential benefits. Government benefits may make up a large part of the required financial support for an individual with special needs, especially as they graduate into adulthood. Some parents are hesitant to tap into these benefits, but they are essential for most everything-from housing and healthcare to job coaching and supported employment. Identify social service, community and government programs that will enhance and support the future care plan, including school, recreation, specialized doctors, and even research protocols. Parents can then match up these needs with available government funding such as Supplemental Security Income and Medicaid, and only have to reach into their pocket for such items as extraordinary medical support, entertainment items such as DVDs and video games, and expenses over and above what the government programs will pay.

Step 5: Document the wonder. Record important information about your child including the individual's likes and dislikes, routines, and habits, so others can continue building on your child's abilities and self-esteem. This information is key information required by teachers, camp counselors, caregivers, as well as future guardians. This step is one most often put off by parents because it can be time consuming, but this information can make a big difference in the future quality of life for your loved one. This process is often referred to as writing a special needs "letter of intent." Guides with outlines to assist in compiling this information are available through various sources.

Step 6: Begin the transition. Even though the typical transition into adulthood seriously begins between the ages of 18 and 21, planning early for this time of life will be helpful. Children grow up fast; they will be an adult before you know it and many decisions have to be made regarding guardianship, housing and government benefits. The best way to ease into this period of life is during your child's teenage years. Research and develop a network of professionals to share important information. Start making a list with names and contact information so you will have it readily available when the time comes for different services or resources.

Step 7: Fund the future. After you have a clear picture of the past and the future (as clear as it can be at the point at which you currently are), think about your own financial plan and how you can best coordinate it with your child's future care plan. At the start of the year, calculate how much it would cost to maintain a certain quality of life for your child through the years, and then make sure there's money to pay for it. Before you begin with a basic savings plan and explore investment options, assess other resources first such as employee benefits available to dependents, disability, long term care, and life and health insurance policies. Be sure any planned inheritance or beneficiary designations go directly to your child's special needs trust. Any sum of money larger than $2,000 left in your loved one's name will threaten his or her access to those much needed government benefits.

Step 8: Review and renew. Once you work through the first seven steps, the process will be easier in the years to come. It's now time to look back at all you have accomplished and reward yourself for all the hard work. Take a break and renew your body and mind, and then make a commitment to reworking the plan on an annual basis.

The process might appear daunting, but connecting with the right professionals will make the future for your child with special needs a more safe and fulfilling one. There is nothing more important than family, so take action and create a future care plan.

Mary Anne Ehlert is founder and president of Protected Tomorrows, a nationwide network of advocates for the special needs community. For more than 19 years, Ehlert has worked with hundreds of families to develop Future Care Plans for individuals with disabilities and has inspired real change in the special needs community through presentations and workshops on life planning focusing on family communication, special needs trusts and government benefits. She created the special letter of intent guide, My Special Life. Ehlert can be reached at mehlert@ProtectedTomorrows.com or 847-522-8086.