Beyond the IEP: Regional Center & State/Federal Services for Autism

Cara Lucier is a California attorney who will be speaking at our upcoming two-day Empowering Autism conference in Orange County, CA on June 27-28, 2014. Much of the information in this article is specific to California.

By Cara Lucier, Esq.

When your child is diagnosed with autism one of the first supports you learn you must seek out is an IEP through the school. The savvy parent quickly learns that beyond the IEP there are many other supports that can vastly improve the quality of life for their child and their family. In addition to school supports, California has created seven more programs to help families of disabled individuals. The California State Budget allocates General fund and Special fund dollars combined with federal “draw down” Medicaid program matching funds to support a comprehensive system of supports through direct services, payments, and specialized access.

During the course of my advocacy and support of families, I have too often encountered autism families that exist in quiet desperation. Families that are struggling financially and do not realize they could qualify for thousands of dollars a year through programs like IHSS and SSI. Marriages and partnerships that fall apart because they do not realize they were entitled to the funding of qualified caregivers to help them in the care of their child while they went on a date or a weekend getaway. Children with disabilities who are sitting at home after school and on weekends because their families are not aware of the recreation and social support opportunities available.

For families of very young children with autism, the priority should be an intensive, highly-individualized early intervention program that focuses on:

  1. Recouping losses and regressions;
  2. Building muscle strength;
  3. Developing communication and language skills; and
  4. Social skill remediation.

Insurance in California is now often required to fund many of these services; however, if your insurance is subject to an exemption from the mandate, the Regional Center system is the “payer of last resort” and may be required to step up and fund such an intervention program. If you believe that your child could benefit from an intensive program you will need to advocate through your insurance and then through your child’s IFSP or IPP!

For example, an intensive early intervention program may look like this:

Service Amount Program Agency Responsible
Preschool, SDC or inclusive 20 hrs/wk IEP School District
Behavioral Therapy (1:1) ABA, RDI, or Floortime 15 hrs/wk IFSP or IPP Regional Center or Insurance
Socialization/Generalization group 4 hrs/wk IFSP or IPP Regional Center or Insurance
Respite 12/hrs month IFSP or IPP Regional Center
Speech (private) 1 hr/wk Varies, for some IFSP or IPP Insurance (if under 3 or over 22) if denied or co-pays, Regional Center or Medi-Cal
Occupational Therapy/Sensory (private) 1/hr wk Varies, for some IFSP or IPP, sometimes CCS Insurance, sometimes if denied, Regional Center or Medi-Cal
Music Therapy 1 hr/wk Varies, for some IEP Insurance or sometimes school district or private pay
Recreation Opportunities 1-5 hrs/wk Varies Non-Profits and some faith-based organizations provide many recreational opportunities!

Once a child reaches school age, families need to consider what additional services they need to support the entire family. Programs such as In Home Support Services (“IHSS”) can relieve some of the stress on a family by providing the extra caregiver support that a child with autism may need in order to continue living at home. Within IHSS is a more intensive service hour allotment called “Protective Supervision.” The Protective Supervision service is for adults and children who, due to a mental impairment or mental illness, need constant observation 24 hours per day to protect them from injuries, hazards or accidents. Many of the behaviors that can cause injury, hazards or accidents in children with autism are wandering, eloping, darting away, or climbing. Families may also require additional care support such as respite and specialized day care, which can be accessed through the Regional Center system.

In order to be eligible for IHSS or to access the Home and Community Based services funding of the Regional Center system families must apply for and obtain Medi-Cal eligibility (Medi-Cal is California’s Medicaid system). Medi-Cal eligibility has three common linkage options: (1) income based eligibility for low income families or children through Covered California; (2) SSI eligibility which provides Medi-Cal linkage automatically; or (3) DDS waiver also known as “Institutional Deeming.”  Many children with autism will qualify for the non-income based Medi-Cal, which may be available regardless of family income.

For 5-13 years olds with autism, socialization and generalization of skills in the community is essential. Parents need to start preparing their child for the world, and the world for their child.

A school–aged child may be entitled to these supports and programs:

  1. IEP;
  2. IPP, including but not limited to behavioral support, generalization/socialization, parent training, case management, and respite;
  3. IHSS;
  4. California Children Services (“CCS”), if an additional qualifying diagnosis;
  5. Medi-Cal;
  6. SSI;
  7. Disabled parking; and
  8. CARE program (Reduced rates for utilities if eligible for Medi-Cal).

For many families of people with autism, an IEP alone is not enough support. Once families become empowered with the information about these state-funded programs and how to access them, they can begin to stitch a quilt of services that envelops the family. It is not always easy to navigate these programs, which is why autism families need to choose their battles at every stage of their child’s life.

For more information about Regional Center and other supports, attend Empowering Autism on June 28, 2014 in Orange County, CA. These sessions will cover the topics discussed in this article:

  • Cara Lucier’s session – Birth to 12 years: Choosing Your Battles: When and How to Access Services from the Regional Center and other State Programs
  • Jodi Bouer’s session – Health Insurance for Autism-related Interventions

For complete information and registration, please go to empoweringautism.ebcala.org.