April, 2006
Have you ever sat down and thought about just how much planning goes into our daily lives? We plan out our work day, set daily schedules, develop game plans for various recreational activities, etc. Now, I know there are some out there that are already saying, "That's not me. I do things spontaneously." Well just try driving to work spontaneously - you'll end up somewhere in the desert out of gas.
It's no different with raising children - parents are always planning. How will their education be taken care of? Do they have enough medical coverage? What type of inheritance will I be able to leave them? Am I providing the best, nurturing environment for their development? So it truly amazes me the number of parents and siblings that seem to have made no plans for that relative with a disability that has lived with mom/dad all their lives and now that the parents have died, the rest of the family is scrambling to find resources to help that individual live independently.
As a hypothetical example, a call might come into my office from the sibling of a 40-50 year old adult with a disability, who has been living with the parents all of his or her life and nothing has been set up to protect their inheritance, determine the availability of accessible housing, determine the eligibility for benefits, etc. Of course the sibling always lives in another part of the country and wants everything to be accomplished while they are here for the funeral. As much as some people don't want to think of this eventuality, there's nothing we can do stop it. These things simply must be planned for. Here are some things that families can start doing to plan for this eventuality because as someone once told me, "Nobody gets out of this life alive."
When your child is in school it is imperative that you get the school system to provide them that "free and appropriate" education that the Individuals with Disabilities Education Act (IDEA) promises. It is especially important that the child have a good "transition" Individualized Education Plan (IEP) after they turn 14 so they can get requisite employment training. If they have a physical disability you might also check into getting the school to do a 504 plan under provisions of the Rehabilitation Act. This would also get your child some accommodations that will help them improve their public school educational opportunities. If your child is in Special Education you need to make sure they are getting the "Independent Living Skills" training that will enable them to live independently. Skills such as appropriate public behavior, basic math and language skills, health and nutrition skills, punctuality, money management, etc.
If the child has a developmental disability check with San Andreas Regional Center to see if the child qualifies for their services, such as respite, mentoring, advocacy, job training, housing, etc.
If your child is receiving SSI benefits, set up a Special Needs Trust as soon as possible. In order to remain qualified for SSI an individual cannot have more than $2,000 in assets. Creating this type of trust will help protect their inheritance (stocks, bonds, cash, etc) from this limit and allow them to continue to receive benefits. Please check with the Social Security Administration before creating one to find out all the details. This may also require getting an attorney.
Affordable housing is very difficult to find in this area, and what there is can be very expensive, especially for those living on a fixed income. To further exacerbate the situation the Housing Authority may not be accepting applications for Section 8 low-income vouchers and has a very long waiting list (years) for those they have. It will definitely take time to find an acceptable housing situation.
If you are that parent/sibling that finds themselves planning for these types of things there are several organizations that can provide some assistance. You can call CCCIL or contact the Special Parents Information Network at 722-2800 or www.spinsc.org.
Remember - Disability is a random
event that can occur in any life, at any moment.
- Michael Bradshaw, Central Coast Center for Independent Living