Accepting the diagnosis of ASD is a difficult first step, and should be followed by a coherent strategy to find funding for your ABA program. ABA is not cheap, with the cost projected to be between $40,000 to $100,000 per year, and it often goes beyond one year. That’s a lot for any one family to shoulder so navigating the system for funding becomes crucial. The variability in cost depends on the quality of the ABA provider, the number of treatment hours a specific child requires, the child’s geographical location, and the treatment model.
The return on such investment is significant. The cost of providing intensive ABA for a young child with autism is minimal considering the gains that can be achieved. After about 2 years of ABA, research predicts substantial cost reductions for most children which may result in significantly lowered or elimination of continuing special expenditures for many. In contrast, a poorly treated low functioning autistic child may require life-long specialized services to accommodate a severe disability which may run into millions of dollars for each individual. Quality, early, intensive behavioral intervention can offer the hope of unprecedented gains for both children and taxpayers. The average cost of three years of ABA based treatment versus 18 years of special education services can produce a savings per capita of $208,500. (Read the study https://www.centerforautism.com/wp-content/uploads/2018/02/Cost-Effectiveness-of-ABA-Treatment-for-Autism-Spectrum-Disorder-5.p)
Today, about 46 states and the District of Columbia have laws that require insurance coverage for autism services. http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx For Californians, health Insurance is a major funding source for ABA program, especially for children under the age of three- CA state law AA88 for Health Insurance Coverage and reimbursement require health insurances to provide coverage for autism.
The first thing is to ask your ABA agency what insurance companies they accept. Ask them how other families they serve were able to get funding through health insurance; ask what paperwork was required for the insurance company to fund. Remember, for those of us in CA, Regional Center can help with the co-pays and deductibles. Families who are seeking public insurance Medi-Cal but are not eligible, Regional Center can also guide you to obtain a full scope Medi-Cal coverage through Institutional Deeming
We all know dealing with insurance company is not exactly a stroll in the park so be mentally prepared. It seems at times insurance companies turn down everything and wait to see if you are going to appeal. Be methodical in dealing with the setbacks; send the follow-up letters, the denial, the appeal and repeat as necessary
The Regional Center system is unique to California; they are nonprofit private corporations that contract with the CA Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities to allow them to live a more independent and normal life. They have 21 offices throughout California to provide to help find and access the many services available to individuals and their families.
Becoming a Regional Center client: First step for the family is to call the Regional Center to initiate the intake process. The Regional Center will conduct its own assessment/diagnosis to determine your child’s eligibility for intervention. Once found to be eligible, you’re assigned a service coordinator/case manager whose job is to help you develop a “person-centered IPP (Individual Program Plan)” or IFSP (Individual Family Services Plan) if under the age three. You and the assigned case manager will sit down together to go over the IPP or IFSP. You can invite anyone else you want at the meeting. This IPP/IFSP is an evolving document which spells out all of the services and support which the Regional Center will provide. You can ask for an IPP/IFSP meeting at any time, as the child’s needs change.
The Pivotal Age Three: If your child is younger than 3 years old, then s/he will be under the Early Start Program and is entitled to receive early intervention services under Part C of the federal Individuals with Disabilities Education Act (IDEA) as well as CA Lanterman Act. http://www.rcocdd.com/wp-content/uploads/peopleweserve/resources/RCOCServices-EarlyStart.pdf
Once the child turns 3, the child will receive services from both the school district AND the Regional Center. (Generally speaking, ASD meets the eligibility criteria from both entities.) Please note that Regional Center’s responsibilities DO NOT END when the child turns 3, but rather shifts with focus on the social, daily-living skills, adaptive skills, etc. as the local school district takes over the responsibilities of child’s education. Regional Center supports its clients from the womb to the tomb unlike school system where the obligation ends at the age of 21(or 18 if one’s on a regular diploma track). For a list of Regional Center services, visit http://www.rcocdd.com/consumers/description-of-services
A couple things to remember in dealing with the Regional Centers:
Case managers come in all different colors, shapes and form- Some are great, and others are lacking. They are your first point of contact at Regional Center, but may not be the last. I found it helpful to be courteous and friendly with my case managers (they are nice people and want to genuinely help!) but I had to escalate issues to the decision maker directly when the process stalled and nothing was happening.
Be courteous and polite. Document everything.
Never sign anything on the spot. Take your time and go over it with your spouse and/or attorney before signing any document.
“No” is not necessarily so! If the Regional Center rejects your request for services, do not give up and think that is the end. (It isn’t over until it’s over!) If the Regional Center rejects your request for service, ask for such in writing which should be mailed to you along with the appeal request form. If you are already receiving services from the Regional Center, then make sure to complete the appeal request form and mail it back to them within 10 days so the services can continue until the issues are resolved (“Aid Paid Pending”). You can continue to explore alternatives, from informally working it out, reaching a settlement, or filing for appeal of the decision.
The squeaky wheel gets the grease. Be persistent and continue to advocate
Special education programs in California are governed by a combination of state and federal laws. Under these laws, school districts must provide each student with a free appropriate public education (“FAPE”). FAPE requires that special education and related services be provided at public expense and without charge, meet appropriate standards, include preschool through secondary education, and conform to an IEP. Here are some key terms in special education law which you ought to know.
The term “FAPE” has been litigated extensively since IDEA (the federal special education law that is now the Individuals with Disabilities Education Improvement Act (IDEA 2004) was enacted. The issue always is what constitute “appropriate” for that child. In Board of Education v. Rowley, 458 U.S. 176 (1982), the U.S. Supreme Court declared that under federal law an “appropriate” educational program and placement is designed to meet a student’s unique needs, it provides services to the to the disabled student sufficient for her to obtain “educational benefit”, and it is provided in conformity with the student’s IEP. In addition, the program must be provided to the maximum extent appropriate in the least restrictive environment. It does not entitle the student to the “best” possible educational program or a “potential maximizing” education. The courts are constantly exploring the determination of what is “educational benefit.” In California, educational benefit is measured by whether the child is making progress toward achieving the central goals of the IEP. In addition to making progress toward one’s IEP goals, an appropriate education is also one in which a special education student is involved in and making progress in the general curriculum of the school district.
Least Restrictive Environment
Special education must be provided in the least restrictive environment, which means that to the maximum extent appropriate, all students with disabilities should be educated with students who are not disabled. Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. The legislative intent has a strong preference for the children with disability to be educated with the typical peers. In analyzing the Least Restrictive Environment, the courts look at four factors: (1) Educational benefit for the student in a regular class versus special education class, (2) Non-academic benefits of interacting with non-disabled peers, (3) Effect on the teacher or other students in terms of disruptive behaviors, and (4) Cost of mainstreaming a student in a regular classroom versus special education day class. Depending on the student’s individual needs, as documented by the IEP team, the child may receive educational programming in a self-contained classroom, or at a special school, nonpublic school or residential facility. This underscores the importance of IEP in your child’s treatment plan.
Special education instruction and Related Services
It includes classroom instruction, home instruction, instruction in other settings, and instruction in physical education. Related services are support services a student requires in order to benefit from his special education program. Education for children with disabilities includes independent living skills, not just academics. Therefore, a broad range of related services may be required, including speech-language therapy, physical and occupational therapy, therapeutic recreation, psychological services, instructions in the home, adapted physical education, parent counseling and training, and interpreting services.
Your job is to argue that the intensive ABA program is the most appropriate (not the best, not the potential- maximizing) education for your child with autism based on his/her unique needs in compliance with IDEA.
Some families decide to privately fund the ABA program because the time is of the essence with the autism treatment. If you decide to privately fund the ABA program, make sure to provide a written notice to the school of your plan ten business days before you remove your child from the public school so you are not prevented from seeking reimbursement later. (20 U.S.C. §1412(a)(10)(C)(i)-(iii), 34 C.F.R. §300.1.48(a)-(c)) Prior consultation with a special education attorney is highly recommended.
In summary, there are no fixed rules when it comes to obtaining funding for the ABA treatment, and each family has a different experience. I had a very supportive Regional Center but had to resort to multiple legal proceedings with the school district to have them pick up their portion of the funding responsibility. My good friend had the exact reverse; a very supportive school, but not-so-supportive Regional Center. Many families receive 100% of ABA program funded by their health insurance. The best thing to do is to start with the goal in mind (that your child will indeed receive ABA treatment, and he/she will get better) and to advocate from all angles as necessary: Health insurance, Regional Center, and School District.
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