Planning for Your Special Needs Child- Key Dates
Planning for your special needs child often focuses around public benefits and preserving those benefits through a Special Needs Trust. These are certainly important components of Special Needs planning. However, there are important time critical steps to take as your special child develops into an adult. Here is a summary of some of those steps:
In California, once you have determined that your child has special needs, you should contact the Regional Center to determine if your child qualifies as a Regional Center client. California has 21 Regional Centers that are community based. The Regional Center consists of private non-profit corporations under contract with the California Department of Developmental Services. The Regional Center will do an assessment to determine whether your child has a developmental disability. A developmental disability is defined as a disability that occurs before the age of 18, is substantially disabling for an individual, and is expected to continue indefinitely. Developmental disabilities include intellectual disability, cerebral palsy, epilepsy and autism. The Regional Center is a resource and gateway to many support services throughout your child’s life. The earlier your child becomes a Regional Center client, the better. Find your Regional Center website to learn about the many services available.
Becoming an Adult – 18 years old
Eighteen is a critical age for special needs individuals because they become legal adults (and you lose your legal right to make decisions for them). In addition, they become eligible for Supplemental Security Income (SSI), which is a gateway to Medcaid (Medi-Cal in California). This is a gateway to other services/resources like In Home Support Services (IHSS) in California.
Shortly prior to your special needs son or daughter turning 18, contact your local Social Security Administration (SSA) office to start the process of determining eligibility for SSI. If approved, your child will be eligible for limited funds for housing and food. Once approved, there are additional steps to take like opening a Representative Payee account, signing up with Medicaid/Medi-Cal, and potentially getting IHSS services or even becoming an IHSS provider.
Additionally, consider obtaining Limited Conservatorship of your son or daughter, depending on their abilities. As mentioned, without this you lose the ability to make decisions on their behalf. Note, there are two types of Limited Conservatorships: Limited Conservatorship of the Person and Limited Conservatorship of the Estate.
Aging Out of the School System – 22 years old
In California, once a special-needs person completes high school, they are eligible to continue in the school system in a transition program. The general purpose of these programs is to build life skills and prepare the special needs individual for life after school. This is one of the most difficult and scary times for parents and the special needs individual. If you fail to act, there will be nothing for your child to do. At this point, Independent Education Plans (IEPs) become Independent Program Plans (IPPs) through the Regional Center.
For lower functioning individuals, a “day program” may be the best option. You should start looking for such a program two to three years prior to your son or daughter turning 22 years old. My son Jake turned 22 this year, and we began searching for and visiting day programs when he was 19. This was fortunate, because the day program we liked the most had a two-year waiting list. When he was done with his transition program this past June, he was able to start that day program immediately. I was amazed to hear from his transition class teacher that most of the other students aging out had no plans. Tragically, those individuals will be sitting at home with no purpose.
Higher functioning individuals may be interested in job training. This can be done through the Department of Rehabilitation (DOR). Additionally, for those individuals looking to live fully or partially independently in California, work with your Regional Center to see if they can get Individual Living Services (ILS) or Supported Living Services (SLS).
The take away from all of this is that when you have a special needs son or daughter, you need to understand what steps need to be taken, when they need to be taken, and then plan in advance. The impact of not planning in advance can have significant negative financial and quality of life impacts to you and most of all, your special needs child.
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