Welcome back: Future Life Planning Part 2

Thank you for tuning in! As I mentioned before, Tara (my life skills tutor) and I made a LONG list of things for parents to remember. This information is based on our own experiences and disability struggles. We hope you find some of it useful.

Ages 4-14:

-Continue encouraging well-balanced, healthy meals and snacks as well as lots of physical activity. Kids are more likely to continue with these patterns as adults as apposed to learning how to eat healthy later in life.

-Continue with any therapies that were suggested or pursue evaluations and testing if you haven’t already (and know something is off).

-Learn as much as you can about federally mandated special education and make sure your school is complying with the services and therapies your child is entitled to.

-Kids with special needs often fall through the cracks, especially students with developmental delay. Schools are not always equipped to provide 1-1 support and students can fall behind very easily and continue to be behind.

-Schools & teachers can only do so much. Parents need to do their part in making sure their children have healthy and safe home environments.

-Hire tutors or extra support for your child if you can.

-Educate your child about their disability. If possible, help them to name their condition and challenges. This will be helpful in the event they need medical attention while you are not around or if they need help from Police or Fire Dept’s.

-Encourage advocacy skills. This is one of the most important skills you can teach your child. Teach them to be brave, strong and to speak up for themselves. Teasing is all too common at this time and children with disabilities are far more likely to be teased.

-Explore your options (in your state) regarding Special Needs Trusts. These accounts will ensure that your child can have a future nest egg that won’t affect government benefits (SSI, SSDI, Medicaid/Medicare). Setting aside even a small amount of money early on can make a HUGE difference in the life of your adult child. It could mean the difference between them living in their own condo or small house versus a sterile government facility (institution, nursing or group home) with limited options for an integrated life in the community.

-Find out what support services your state offers for your child (both as a child and as an adult). Explore the adult system EARLY. If there are waiting lists for services, get on them as soon as you are able. Sometimes it takes years and years to get services, depending on your state.  In IL, for example, there is a waiting list for community services and supports with 22,000 people on it with only a few thousand new individuals being served every year. People here have limited options for housing and often wind up in run-down state facilities or at home with their parents instead of living independently in their community.

-Ask questions & get involved. ADVOCATE! Find out what your options are.