The Autism Society Event and Education Recordings Archive

This seminar helps families plan effectively for their special needs children by introducing them to the Letter of Intent and the Life Planning Notebook. These two tools allow families to effectively communicate their choices and dreams for their children on such major issues as guardianship, housing and finances while providing an in-depth instruction manual for future caregivers of their child. By using these tools, parents can prepare an environment where their wishes for their children can be heard and followed. "Life Planning: a Primer for Special Families" is a guide to help families plan effectively for their special needs children by introducing them to the Letter of Intent (a love letter to a future caregiver) and the Life Planning Notebook (a manual for our children).  These two tools allow families to effectively communicate in writing their choices and dreams for their children while also providing an in depth instruction manual for future caregivers for their child. 

As parents of special needs children, we know the our children exceeding well, but most of that knowledge is in our heads. It is important that this information be passed on to future caregivers so that our children are understood.  However, in order to prepare these materials, certain questions need to be addressed.

The first question is Who will watch over my child?  I discuss how guardianship passes for children under the age of 18 (usually by will) and how guardianship is addressed once a disabled child reaches 18 (by going to the probate court).  Attention is paid to the delicacy of declaring a self-aware adult child incompetent and how different guardianship powers (over medical decisions, over finances) can be sought.

The next question is Where will my child live?  I discuss the pluses and minuses of several choices including living with parents or family members, group homes, home shares and two-family houses.

Next is How will my child pay for things? I discuss the balancing of personal finances with government resources available to disabled adults.  On the personal side, families generally want to accumulate as much funds as possible and I touch upon several strategies including 529 plans and survivorship life insurance.  I then contrast that with the government resources (SSI, SSDI, Medicaid & Medicare) available to disabled adults with less than $2,000.  I then discuss how to combine both strategies by introducing the concept of Special Needs Trusts.  For those with children who may not be disabled under the law, there is a short discussion of trusts that may protect our children from themselves.

The final question is How can I effectively communicate my wishes for my child?  I stress the importance of a will, especially with respect to guardianship and asset distribution, and working with an attorney who understands the issues of adult disabled individuals.  Next, I introduce a Health Care Power of Attorney that all parents should have if they travel.  Finally, I give examples of what information may go into the Letter of Intent and the Life Planning Notebook.

Each attendee gets a copy of the presentation and an outline to help them create their own Life Planning Notebook.  Because I work for an NASD firm, I am required to take attendance and file the list with my employer.  Generally I send a thank you note to attendees and follow up with a phone call to attendees who have requested such in a feedback form.  I have given this presentation at a variety of forums including the National Autism Society, YAI/NIPD, the Connecticut Downs Syndrome Society,  Eagle Hill School, the Children’s Apraxia Network of Philadelphia, FAVAN (the Farmington Valley Aspergers Network), the Jericho SEPTA, the Connecticut Association for Children and Adults with Learning Disabilities, Hartford ARC and Greenwich ARC.

Learning Objectives: