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Where to start?
A new autism diagnosis usually brings more questions than answers. Over the next many years, you will navigate three main systems of services, often all at the same time. If your child is young at the time of diagnosis (under 3 years in many states), then you will likely focus on medical services at first.
At the age of three or later, then educational services are layered on – and become the primary source of services for most 5-18 year-olds. Public services vary widely by both age and state of residence. If you live in California, you’ll find a basic road map below. If you live elsewhere, then you will need to check with local agencies to learn more about specific resources available to you.
If you have a new autism diagnosis in your life, it is very likely that it came from a medical provider. If you suspect your child has autism, then start with your pediatrician, and request a referral to a specialist, if needed. A psychiatrist, psychologist, neurologist or developmental pediatrician can diagnose your child. As long as the provider is medically licensed (not all psychologists are), then they can provide a prescription for treatment. The most common treatment for autism is applied behavioral analysis, or ABA. Depending on your child’s strengths and challenges, other prescriptions may be written for speech therapy, occupational therapy and/or physical therapy.
The best place to start is with your primary insurance company. Ask for a list of providers in each category that was prescribed, and contact ALL of them. Many will have waitlists. Others won’t answer or call you back. Others will only provide limited hours of service, or serve patients only at a location that is challenging to reach in traffic. Make note of these limitations and restrictions, and ask to be placed on all waitlists. If services cannot be provided in a reasonable amount of time (typically 10-14 days for mental health services, like ABA, or 30 days for physical health services like occupational therapy), then you should have grounds to request a gap exception or out-of-network agreement.
Note: The following information is specific to the public services in the State of California. Programs vary widely from state to state.
In the state of California, public services for individuals with autism or similar disabilities begins with the Regional Centers. For children under the age of three, services are typically freely granted – and range from a weekly session of speech therapy for a child with a speech delay, or a full suite of services for individuals with more pervasive challenges. You will likely also need to pursue medically-based services, but the Regional Center can help fill in the gaps, if any remain.
To qualify for services after the age of 3, an individual typically needs to be more highly affected by autism (or have other qualifying conditions). Regional Center Services for individuals between the ages of 3 and 22 typically include respite services. Respite providers may be any certified non-parent who can provide care for the individual with special needs, allowing the parents to take a break. After the age of 22, individuals can access adult services that are only available to (and/or funded by) the Regional Center.
If your child qualifies for Regional Center Services after the age of 3, then you may apply for him or her to receive Medi-Cal health benefits as an individual (this is in addition to any health benefits your child may receive as a dependent on your health care policy). Depending on your medical providers, Medi-Cal may be able to cover co-payments, prescription co-payments, or other medical costs.
If your child is both a Regional Center client after the age of 3 AND a Medi-Cal recipient, you can also apply for him or her to receive In-Home Support Services (IHSS). The number of hours will vary depending on your child’s needs, in comparison with other children of the same age. So if your child is developmentally similar to a typical child of the same age, then he or she will receive fewer hours than if the gap is larger. If your child qualifies, a parent may become the IHSS provider. If the parent or other provider lives in the same home as the recipient, then the income to the provider is tax-free.
If your child is under three, then educational services will typically not apply. But beginning on your child’s third birthday, in many states, then the school district of residence should evaluate the child to determine if he or she qualifies for school-based services. An educational qualification for services is a separate process from the medical or public services evaluations.
You need to request an evaluation for special education services in writing – email is the most straightforward method, as it includes a timestamp. The school and/or district has 15 days to respond to the request and then up to 60 days to complete the assessment process.
If your child qualifies for special education services, an Individualized Educational Plan (IEP) is drafted and finalized. An IEP is goals-driven. If you believe your child requires certain services, then there must be a SMART goal that would require such services. (A SMART goal is specific, measurable, achievable, realistic, and timely.)
Younger children who may be less severely affected by autism may not qualify for educational services immediately. If that is the case for your child, monitor him or her closely, especially as you approach the middle grades of elementary school. The Common Core Standards have shifted concepts like point of view and perspective-taking into younger grades, and many individuals on the autism spectrum struggle with these skills.
If your child is moderately or severely affected by autism, then an educational qualification for services is usually less challenging to obtain. That doesn’t mean you don’t need to monitor his or her progress and document the need for changes in services.
How to manage a new autism diagnosis? Self-Care
It can be challenging for the entire family to learn to manage a new autism diagnosis. Be sure to practice self-care, so you don’t fall apart in the process. Need a survival guide? Click here.
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