Now that you have a diagnosis, how do you find the help you need?  We've inlcuded a number of resources to get you started:  Regional Centers, the Early Start Program, local school districts, financial resources, infomation on accessing your medical insurances, legal advocates, and parent-to-parent support. 

There is a lot to learn, please call or email if you have questions.

Regional Center

In California, non-profit organizations called regional centers provide diagnosis and assessment of developmental disabilities like autism.  Regional Centers will also help plan, access, coordinate and monitor the services and supports. There is no charge for the diagnosis and eligibility assessment.

To be eligible for services, the disability must begin before the child’s 18th birthday, be expected to continue indefinitely and present a significant disability. Also, the disability must be due to one of the following conditions:  Note Regional Center does not serve Asperger’s

1. Mental retardation
2. Cerebral Palsy
3. Epilepsy
4. Autism
5. Disabling conditions closely related to mental retardation or require similar treatment.
6. Infants and toddlers (age 0 to 36 months) who are at risk of becoming developmentally disabled or who have a developmental delay may also qualify for services.
7. Individuals at risk of having a child with a developmental disability may be eligible for referral for genetic diagnosis, counseling and other prevention services.

Developmental disability does not include other disabling conditions that are solely physical in nature.

Once eligibility is determined, most services and supports are free regardless of age or income. In addition, infants and toddlers who are at risk of having developmental disabilities or who have a developmental delay may also qualify for services or individuals at risk of having a child with a developmental disability may be eligible for genetic diagnosis, counseling and other prevention services. 

Inland Regional Center serves Riverside and San Bernardino counties and can be reached at (909) 890-3000 or  www.inlandrc.org.  Some of the services and supports provided by the regional centers include:

• Information and referral
• Assessment and diagnosis
• Counseling
• Lifelong individualized planning and service coordination
• Purchase of necessary services included in the individual program plan
• Resource development
• Outreach
• Assistance in finding and using community and other resources
• Advocacy for the protection of legal, civil and service rights
• Early intervention services for at risk infants and their families
• Genetic counseling
• Family support
• Planning, placement, and monitoring for 24-hour out-of-home care
• Training and educational opportunities for individuals and families

Regional centers are required by law to provide services in the most cost-effective way possible. They must use all other resources, including generic resources, before using any regional center funds. A generic resource is a service provided by an agency which has a legal responsibility to provide services to the general public and receives public funds for providing those services. Some generic agencies you might be referred to are the local school district, county social services department, Medi-Cal, Social Security Administration, Department of Rehabilitation and others. Other resources may include natural supports.

Early Start (0-3 yrs)

The Early Start program is a state funded program funded through Regional Centers to provide services to infants and toddlers under the age of 3 who are ‘developmentally delayed’ or have an ‘established risk’ or are ‘at high risk’ of a developmental delay. In 2009, due to budget cuts in California, eligibility for toddlers aged 24 months or greater who were ‘at risk’ of a developmental delay was eliminated.

The Department will establish a Prevention Program to be available at each regional center for infants and toddlers who do not meet the federal Early Start Program or Lanterman Act eligibility requirements. The prevention program will at a minimum include intake and assessment, case management, and referral to appropriate generic resources. During their participation in the prevention program, if an infant or toddler becomes eligible for the federal Early Start program or Lanterman Act services, regional centers will be able to serve them in those programs.

Regional Centers must follow the guidelines under the Lanterman Act.  Protection and Advocacy, Inc, has written “Rights Under the Lanterman Act: Regional Center Services for People With Developmental Disabilities”.  This publication is written an easy to read format.

Financial

Depending on your families needs there are a number of financial resources:

Social Security.  There are two programs through the Social Security that may be able to help a family financially.  Both can be complicated with different rules and formulas:   

• Supplemental Security Income Program (SSI)- The SSI program makes payments to people with low income who are age 65 or older or are blind or have a disability.  When you get SSI, you also may get Medicaid which helps pay doctor and hospital bills. Your local welfare or medical assistance office can give you information about Medicaid.
• Social Security Disability Program (SSDI)- Under the Supplemental Security Income (SSI) program, a child from birth to age 18 may receive monthly payments based on disability or blindness if: He or she has an impairment or combination of impairments that meets the definition of disability for children and the income and resources of the parents and the child are within the allowed limits. An adult child (a person age 18 or older) may receive monthly benefits based on disability or blindness if: He or she has an impairment or combination of impairments that meets the definition of disability for adults; and the disability began before age 22; and the adult child's parent worked long enough to be insured under Social Security and is receiving retirement or disability benefits or is deceased.

Social Security’s Publication Benefits For Children with Disabilities or call 1-800-772-1213

In Home Supportive Services (IHSS)

The In Home Support Services Program is designed to provide patients with disabilities with the supports they need in order to remain in their own home. Obtaining IHSS services can provide individuals with psychiatric disabilities the services they need to remain in the community and/or return to their own home following placement in a facility. Individuals maybe eligible for up to 238 hours of services each month.   IHSS pays for workers to provide services individuals can not do themselves because of his/her disability.  Income guidelines are similar to that for SSI, and does not count against SSI for income.  Protection and Advocacy has an information packet at: www.pai-ca.org/OPR/Information/IHSS.pdf.

Riverside County (888) 960-4477

San Bernardino County (909) 945-3865

For other grants.  Check our resource guide for a list of agencies that will consider giving personal scholarships to families in need.  

Local School Districts

There are a number of laws that give your child rights to a special education inlcuding the:

• Individuals with Disabilities Education Act (“IDEA”)  the Americans with Disabilities Act (“ADA”),
• Section 504 of the Rehabilitation Act
• California Education Code. 

 The Individuals with Disabilities Education Act (IDEA) is the law that is most commonly used to provide a special education and the one we will focus mostly on. IDEA covers children ages 3 - 21, with certain learning, emotional, and physical disabilities. The children covered must have one of the following disabilities AND show that the child needs special education or that the disability adversely affects the education of the child.  The disabilities are:  mental retardation;  hearing impairments (including deafness); visual impairments (including blindness); serious emotional disturbance; orthopedic impairments; autism; traumatic brain injuries; or other health impairments (such as ADD, ADHD). 

IDEA is a very important law in your child’s education. Some highlights of this law include: 

• Every child is entitled to a free appropriate public education (FAPE). This means an appropriate education, no matter what the cost.
• Children are entitled to Education must be provided in the “Least Restrictive Environment” (LRE).
• Education must be individualized and appropriate to the child’s needs.

• Parents of a child in special education have the right to be an informed and knowledgeable participant of the IDEA process.  This means parents are part of a team that decides what kind of special education the child will receive. The team can be comprised of schoolteachers, administrators, medical, health, mental health and/or educational professionals.
• The Individualized Education Plan (IEP) is a written document that outlines a child's educational program. It should identify the services a child needs so that he/she may grow and learn during the school year. It is also a legal document that defines goals for the school year, services needed to help the child meet those goals and what methods will be used to evaluate the student's progress. 
• Related services are defined in the regulations as transportation and such developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education. Related services may include: speech-language pathology and audiology; psychological services; physical therapy and occupational therapy; recreation, including therapeutic recreation; early identification and assessment of disabilities in children; counseling services, including rehabilitation counseling; orientation and mobility services; and medical services for diagnostic or evaluation purposes only; school health services; social work services in schools; parent counseling and training.

There are a number of books and other resources to help you understand what rights and the procedures that the school district must follow.  It is important that you understand your rights so that you may be an active participant in this process. 

• Protection and Advocacy Inc online resource Special Education Rights and Responsibilities
• ASA’s Education page
• One of the most popular books on advocacy is “From Emotions to Advocacy, 2nd Edition” by Peter W. D. Wright, Esq. and Pamela Darr Wright

  Medical

Health insurance can also be to obtain services like speech therapy, occupational therapy, and counseling.  Coverage often depends on the type of insurance you have, the diagnosis, and the type of treatment or therapy you are requesting.  For instance, many insurance carriers will not pay for “autism treatment” but they may pay for occupational therapy because of feeding issues or low-muscle tone. 

As of Dec 2009, fifteen states have passed autism insurance legislation that specifically requires private insurance companies to provide coverage of ABA and other structured behavioral treatments. (California is not one of them).  In 1999, California Assembly Bill 88 (AB 88 or the "Mental Health Parity Bill") mandates coverage for the diagnosis and treatment of Pervasive Developmental Disorder and Autism.

Insurance Help for Autism – Great information and includes a template for letter to insurance company requesting payment of autism related treatment.

Medicaid and Medicare.  Medicaid is a health care program for people with low incomes and limited resources. In most states, children who get SSI payments qualify for Medicaid. In California  we call our Medicaid program “Medi-Cal”.  This allows a person who meets the criteria above to be determined as eligible for Medi-Cal regardless of his or her parent’s or spouse's income and resources.  This can be helpful as sometimes the family’s health insurance benefits do not cover the entire cost of services.  Your Inland Regional Center case worker can help you fill out the paperwork needed.

Legal Advocacy

The American Heritage® Dictionary of the English Language (2000) defines an advocate as:

1. One that argues for a cause; a supporter or defender:
2. One that pleads in another's behalf; an intercessor:  
3. A lawyer.

There are many systems to navigate in the autism world depending on your child’s needs :  the education system (schools); the Regional Center system; the state and federal systems when dealing with Social Security, MediCal, In Home Supportive Services; and the medical system (dealing with insurance billing and doctors).  Educating yourself on your rights and responsibilities while effectively navigating these systems can be overwhelming at times, Some families choose to hire someone to assist them in a certain area, whether it is a advocate or an attorney. 

See the Inland Empire Autism Resource Guide for more information on specific advocates in our area.

Parent to Parent Support

1. Network with other parents on how to navigate the different systems – books and websites have great information, but finding a parent who has successfully navigated systems to receive services. for their child is another invaluable tool.
2. Find emotional support from parents who have experience – getting a diagnosis and navigating the system is an emotional process. 
3. Information and education on a variety of topics – the world of autism is constantly changing.  Research is being done on therapies, causes and treatments.  Laws change or become interpreted in different ways.  Keep up!
4.  Practical advice – Who else can tell how to handle the grumpy lady at the grocery store, how to deal with your child’s diet issues or what to do when your child refuses to go to school.
5. Find local resources.  Find out what other parents think of dentists, doctors and different providers.

We have provided a list of support groups in the Inland Empire for your convenience in the Inland Empire Autism Resource Guide.