Below are a list of resources and tips that will help you navigate the world of special needs/disabilities in California (and elsewhere).
Disability.gov – This is the U.S. federal government website for information on disability programs and services nationwide. It’s a good place to start if you’re overwhelmed by the various organizations and programs available.
Find A Social Worker – Medical social workers are employed in hospitals, hospices and public or private healthcare institutions. They are supposed to counsel individual clients and their families, facilitate support groups and coordinate short- and long-term healthcare decisions and services. From personal experience, however, not all social workers are created equal. Most focus on emotional support, which is important, but rarely talk about resources to help families facing long-term health issues after discharge. Before you or a family member is discharged from a hospital, ask to see the Social Worker.
Regional Center – California has 21 regional centers with more than 40 offices located throughout the state that serve individuals with developmental disabilities and their families. Start here if you suspect your child has Autism or other developmental disability. It may take some persistence to get them to take your case. Once you get a case worker, the most important thing you can ask is “What programs do my child may qualify for?”
Disability Rights of California – This organization advocates for people with disabilities solve disability-related problems. This is a good starting point if you’re not sure about services available and if you encounter issues with getting proper services. They can help you with problems like:
- Rights to basic support, personal care, therapy and health care – like Supplemental Security Income (SSI), In-Home Supportive Services (IHSS), Medi-Cal, and California Children’s Services (CCS).
- Discrimination in housing, transportation, employment, and access to public and private programs and services.
- Regional center eligibility and services that promote independence — such as supported living and family supports.
- And more
In-Home Supportive Services (IHSS) – The In-Home Supportive Services (IHSS) Program helps pay for services provided to low-income elderly, blind or disabled individuals, including children, so that they can remain safely in their own home. IHSS will allow a parent to be paid as the child’s IHSS care provider, if due to the child’s special needs, the parent cannot work outside of the home. However, you will only be paid for tasks that are not considered routine household chores.
Understood.com – This is a fairly new website with good resources and tips for parents facing special needs-related issues such as IEPs IEP stands for Individualized Education Plan and is basically a written plan for every student with a disability who is found to meet the federal and state requirements for special education.
Autism Health Project – Karen Fessel founded the Autism Health Insurance Project (AHIP) after struggling to secure services for her son, who has Asperger’s. She started AHIP to help children on the autism spectrum obtain medically necessary services by supporting families in their journey through the insurance maze.
Family Voices – Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. I haven’t take advantage of this resource yet but a few parents told me that the local branch of this organization provides advocacy services that have made a difference.
Shane’s Playground – A good list of disability-related resources.