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 and retaining it. 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, and navigating the system for funding is 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 – 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 – runs into millions of dollars for each individual.
Competent, early, intensive behavioral intervention can offer the hope of unprecedented gains for both children and taxpayers. Estimated savings per child to age 22 are about $200,000; to age 55, $1,000,000.
So what are the potential funding sources for your ABA program? They are:
- Your local school district
- Your Regional Center
- Your health insurance
- Yourself
In summary, there are no fixed rules when it comes to obtaining funding for the ABA treatment, and each family has a different experience. My family 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. I know of another family who has been getting 100% of her ABA program funded by insurance she obtained through her employer (rare, but possible.) Until the system can sort out how insurance, schools, and Regional Centers can each contribute to the proper autism treatment, the best thing to do is to start with the end in mind (that your child will indeed receive ABA treatment, and he/she will get better) and to advocate from all angles as necessary: Regional Center, school district and health insurance.
The Funding Source #1: Your Local School District
What is Special Education?
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 Individual Education Program (“IEP”-hyperlink to “At the IEP meeting”).
Special education instruction can include classroom instruction, home instruction, instruction in other settings, and instruction in physical education. It includes independent living skills as well as academics. Related services are defined as any service that is necessary to help a child benefit from her special education program such as 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.
IEP is the vehicle that is used to deliver special education instruction and related services that meet the unique and specific needs of a child who is found to be eligible for special education. It is a legal document that contains a written statement describing the child’s present educational performance, short-term objectives and annual goals for development, specific services to be used, dates to begin and duration of those services, criteria, schedule, and procedures for evaluating whether those objectives are being met.
Step 1: Referral
You (parents or legal guardian) contact your school district and make a special education referral by writing a letter telling the district that you are concerned about your child’s educational process and request that the district begin assessments for special education. Upon receipt, the district has 15 days to develop an assessment planed and the parents have 10 days to give consent to any assessments in the plan.
Watch out for:
Assessment must cover all areas of suspected disability. (California Education Code (“EC”) §56320(f))
In conducting assessment, school must follow the procedural requirement as specified in EC §56320.
Step 2: Assessment
School assesses the child, and the parents receive a copy of the assessment report.
Watch out for: If the assessment is inappropriate, parents can request an independent educational evaluation (“IEE”) at public expense by providing a written notice 10 days before the IEE. School must either file for due process to defend the appropriateness of its assessment or to pay for the IEE (EC §56329 (b)-(c)). Be aware that some districts may require parents to pick from their list of “independent” assessors; they might turn out to be not so independent! If you find yourself involved with the IEE issues, please consult a special education attorney.
Regardless of who ends up paying, a private assessment by a reputable professional in the field is a must for effective advocacy. (See the Private Assessment )
Step 3: Convene for an IEP meeting to develop the child’s IEP.
Watch out for:
- Procedural violation of FAPE: When parent requests an IEP meeting, the school must hold it within 30 calendar days. (EC §56043(l))
- IEP meeting must have a parent, a regular education teacher, a special education teacher, a representative of the school district, and the persons who conducted assessments of the child. (EC §56341)
- IEP shall meet at least annually to review the IEP document, and reassessment shall be conducted at least every 3 years (triennial IEP) – EC §56043 (j)(k)
- Parents must be afforded an opportunity to participate in meeting with respect to the identification, assessment, and educational placement. (EC §56341.1(f))
- Predetermination of IEP- for example, district has an unwritten policy against funding an intensive ABA program.
- Parents must be given a copy of the IEP. (EC §56341.5(j) CCR § 3040 (b))
- Substantive violation of FAPEInappropriate education plan- The law does not entitle your child to the “best” possible educational program or a “potential maximizing” education. However, it must be designed to meet a student’s unique needs, and sufficient for the child to obtain “meaningful educational benefit” in conformity with the IEP.
- The staff (teachers, aide, other personnel) implementing the IEP must be sufficiently trained and supervised to address the child’s needs. Some school district claims their classes do “ABA” or insist upon using their own 1:1 aide versus the ABA aide from the ABA agency. The issue is whether they are sufficiently trained and supervised which is essential for research-based ABA intervention. (See Picking the Quality Provider).
- Least Restrictive Environment- To the maximum extent appropriate, students with disabilities are to be educated with students who are not disabled, and special classes, separate schooling, or other removal of students with disabilities from the regular education environment may occur only when the nature and severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. EC §56342(b)
- Extended School Year services (ESY) must be provided if a child’s unique needs require it. (CCR § 3043)
Step 4: Parents accepts/rejects the IEP.
Watch out for: Private placement- Generally, the district is not required to pay for the private education service. However, if the school had not made available FAPE prior to the time of enrollment at the private school (e.g., ABA agency), then a court may require the school district to pay for the private education. Parents must notify the school district 10 business days before placing the child in a private setting if to be reimbursed later. (20 USC §1412 (a)(10)(C)(i)-(ii))
Step 5: File for due process
Watch out for: Stay put- While the hearing is pending, the child remains in his /her present placement (EC §56505 (d))
Getting funding for ABA program from your school district is not an easy feat, but it can be done. ABA is expensive and as such, it’s not unusual to get a push-back from the school.
(When I brought up the topic of intensive ABA program my son has been receiving as part of his early intervention services from the Regional Center and how I wanted the IEP team to adopt the educational portion of it, my school administrator laughed and told me point blank, “We don’t do that.”)
As an equal member of your child’s IEP team, your ultimate job is to convince your IEP team and if it does not work, the hearing officer that the ABA program is the FAPE that is tailored to meet your child’s unique and individual needs versus the one-size-fits-all special day class type of setting often offered by the school district. Remember to avoid the taboo words like “the best” “maximize the potential,” or “recovery”.
At all time, you must give 100% of yourself to show what a reasonable and caring parent you are and that you have done your part in the process; you don’t unreasonably withhold consent to schools’ assessment plans, you always attend the IEP meetings and communicate your concerns, you return their calls and promptly follow up with the school’s requests as long as they are reasonable, and you are “open” to school’s suggestions by always checking out school’s recommended placements.
By the same token, trust no one and document everything (e.g., audio record all your IEP meetings, take good notes during assessments, observation, and meetings, and keep a document trail of communications with the school.) Remember this is a process to build a case for your child’s ABA program. Often many parents consult with special education attorneys and do end up filing for due process hearings. After filing for the due process hearing but before the actual hearing date, resolution and mediation meetings are held in attempts to reach a settlement, and many cases do settle.
Consultation with a special education attorney for viability of case and a budget for due process hearing including expert witnesses and all other costs is highly recommended. And no matter where you are in the process, always keep the big goal in mind: your child will receive a quality and intensive ABA program and will indeed get better!
The Funding Source #2: Your Regional Center
Regional Centers are nonprofit private corporations that contract with the California Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities. They have 21 offices throughout California to provide to help find and access the many services available to individuals and their families.
They are governed under the Lanterman Developmental Disabilities Act, which gives people with developmental disabilities in California the right to services and supports that will allow them to live a more independent and normal life. Empower yourself by reading the Rights under the Lanterman Act, an invaluable manual written by Disabilities Rights California.
Becoming a Regional Center client
The first step is to call the Regional Center serving their geographical area to initiate the intake process. Ask for an appointment for “intake and assessment” and bring to the intake meeting any records you have on your child’s developmental history to speed up the process. The Regional Center will conduct its own assessment/diagnosis to determine your child’s eligibility for intervention.
The assessment by the Regional Center must be done within 120 days. Once found to be eligible, family is assigned a service coordinator/case manager whose job is to help family develop “person-centered IPP (Individual Program Plan)” or IFSP (if under 3, Individual Family Services Plan), and to make sure that family gets the services they are entitled to from other agencies. The Family and the assigned case manager will sit down together to go over the IPP or IFSP. This IPP/IFSP is an evolving document between the family and the Regional Center which spells out all of the services and support which the Regional Center will provide. The Family can ask for an IPP/IFSP meeting at any time as the child’s needs evolve.
At the IPP Meeting:
Before the meeting, sit down and make a list of goals for your child to live a more independent and normal life. Be as specific as possible and include steps necessary to reach each goal. The goals may include where you want the child to live (e.g., at home) , your child’s issues that need to be addressed ( e.g., decrease of maladaptive behaviors, increase of self-help skills, compliance, attention, etc.) , the way your child should be included in the school and the community (e.g., an increase of social skills, communications skills, and safety awareness) and the parents’ need to have a break from caring for a child with disabilities (e.g., respite care).
Then, list the services and supports your child would need in order to reach the goals and for your family to successfully maintain your child at home. List the amount of the services you’d need. Regional Center cannot say it does not provide services that are necessary and it cannot place arbitrary limits on the amount of the services it will provide.
You can invite anyone you want to your IPP. It’s a good idea to have someone with you who can help you advocate. The IPP meeting is about your child and it’s very important that you understand what is being said. Ask for interpreter if necessary. Take notes to document the agreements.
The IPP document should contain (1) the specific goals and objectives (2) the services and supports that will be provided; (2) who will provide the services; and (3) when the services will start. You can agree to IPP in part while working out the differences with other parts.
If the Regional Center says “no” to any new service request, get a written notice of the denial within 5 days. If the Regional Center says it wants to reduce or end a service you are already getting, it must give you written notice 30 days in advance of the change. The notice should include an appeal from that you can fill out if you choose to appeal.
Promptly file an appeal. You must file the appeal within 10 days if you want current services to be continued during the appeal process. It’s called “aide paid pending”. If you do not need aide paid pending, then you have 30 days to appeal. Even after you file an appeal, you can continue to explore alternatives, from informal meeting, mediation, reaching a settlement, go to the hearing or withdraw your request.
The pivotal point- age 3
If your child is younger than 3 years old, then the child qualifies 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 Lanterman Act. It is often easier to receive services before a child turns 3. It is much easier at this point to have ABA program as a Regional Center client.
At the initial IEP meeting with the local school district, if the family already has the Regional Center funding an intensive ABA program and has data to show progress, it is easier to justify the request for continuing services by both the local school district and the Regional Center. For families desiring an intensive ABA program, this is the time to have the program in place with the provider of choice at the desired intensity before the local school district comes in the picture.
Once the child turns 3, the child will often 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 the child’s education. (See the Funding Source-Your School ) In many cases, the Regional Center funds the home program (after-school) portion of the ABA program, while the school district funds the ABA aide services during the school hour.
A couple of things to remember in dealing with the Regional Centers:
Case managers come in all different colors, shapes and form- Some are great, while others are lacking. (You can always request a new case manager if you are not satisfied.) They are your first point of contact at Regional Center, but may not be the last. I found it helpful to escalate issues to the decision-maker directly when the process stalled and nothing was happening. Remember, they are NOT your child’s advocate; you are.
- Be courteous and polite. Document everything.
- Never sign anything (IPP, for example) on the spot, but do take your time to ponder the details and go over 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 ain’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. (Don’t throw away the appeal form.) The squeaky wheel gets the grease. Be persistent and continue to advocate, as you are your child’s voice and only you have your child’s best interest in heart.
The Funding Source #3: Insurance
Health Insurance can be another funding source for the ABA program. There are parents who have successfully fought for such funding against insurance companies. Many families report that insurance companies turn down everything and wait to see if you are going to appeal. If you opt for to explore insurance funding, prepare yourself to be methodical in dealing with the set- backs – the follow-up letters, the denial, the appeal.
The Funding Source #4: Yourself
Some families decide to privately fund the ABA program because time is of the essence with autism treatment. If you decide to privately fund the ABA program, make sure to provide a written notice to the school of your plan 10 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)) Consultation with a special education attorney is highly recommended.
