National Association of Mothers' Centers

Summary of Parenting Seminar Presented on October 22, 2008

Saundra Gumerove, Esq. has made it her mission to advocate for families with special needs children so she can share her own experience with her eldest daughter who is a developmentally disabled, learning disabled and medically involved young adult.  Saundra found that it was even difficult for HER – a woman with a law degree – to navigate the system.  There were so many difficult questions that needed answers.  Who will take care of my child when I’m not around? Will my child have a satisfactory quality of life?

What many people may not think about, or may not even realize, is that once a child turns 18, parents do not have rights to their child’s medical information.  Parents’ involvement in critical decisions can be severely limited – even if the child has special needs and may not be able to make decisions for themselves!  A child is considered an adult at age 18.  As a parent, you cannot make healthcare or end-of-life decisions for your child unless you take appropriate actions ahead of time.

Saundra works with parents and caretakers to help them determine if their child may need a guardian.  When considering this question, you must determine whether he or she can make decisions, live alone and handle personal finances.

Streamlined Guardianship
Setting up 17A Guardianship can cost about $2,000-3,000.  It is an efficient process that can be amended if necessary.  When choosing a guardian for your child, be sure to select  someone who knows your child well and loves them.  The ideal candidate will always have the child’s best interest in mind and will likely live longer than your child.  They will know the child’s likes and dislikes. 

The Healthcare Decision Act gives 17A guardians the ability to make end of life decisions.  Only a guardian can set up a trust for the child.

Financial Planning
Supplemental Security Income of only $1 allows a child to collect Medicaid.  Medicaid covers medical expenses and also pays for the “extras”  including special doctors, programs, recreational activities.  It is important to keep in mind that leaving money to a disabled child could disqualify them from Medicaid.  The way to work around this is to set up a Supplemental Needs Trust, which provides additional funding for things above and beyond the basics of food, shelter and clothing.  It can be set up by the child’s parent, family member, or someone who is close to the child.  It can come from a 401K, insurance, savings, etc.  The trust ensures that the disabled person has money for what might be considered “extras” such as favorite things, books, entertainment, vacations or specialists.

A Pooled Trust provides professional management of funds to ensure that your loved one is cared for.  Money left after the disabled person dies is used to support other disabled people who do not have trusts set up for them.

Organizations such as AHRC, Life’s WORC, FREE (Family Residences and Essential Enterprises), Center for Developmental Disabilities and DDI participate in the New York State Cares that develop and fund group homes.

A Letter of Intent will can provide a blueprint for what you want for your child when you are not longer around.  It documents your child’s specific likes, dislikes and rituals.  It also includes important information such as medical history, things that upset the child, things that calm them down, special people in their lives, and places they like to go.

If you have special desires for your child such as special doctors, trips, activities, and other quality of life concerns you must make sure you document them.  Failure to plan may leave your child in a very undesirable – and vulnerable – situation.  Leaving important decisions to chance can result in your child having a less satisfactory quality of life than they deserve.  Adequate planning will give you peace of mind and ensure your child is well taken care of throughout his or her life.

For more information, please contact Saundra Gumerove, Esq. at 516 822-3397.