Creative Funding for ABA
By Carolyn Cordes
I have a son, Connor, who turned 3 in October 2003, and we finally got the diagnosis of autism in that same month. I believe ABA is the best therapy for my child, but funding it is a big issue. I wanted to share some innovative ideas for finding funding for an in-home ABA program. I hope you find an idea here that will help you get the help you need for your child.
First, try your insurance company. Read your plan carefully and call to talk to a representative to find out if a program like this has ever been covered. If you're not satisfied with the answer you receive, you do have rights to appeal their decision. You'll have to research the laws in your state to find out what they are required to pay for. Unfortunately, our insurance is self-funded, which means they aren't subject to most of the laws in our state designed to oversee HMO's and PPO's. Our insurance company has told me that this type of therapy would probably be covered under mental health, which only provides for 30 visits to a clinic per year under our plan. We are hoping this will help pay for visits to a clinic to get an evaluation, training, and guidance from a certified behavior therapist.
If you live near a university or community college, try to recruit students who are majoring in special education or elementary education to act as the day-to-day "therapists." Talk to the professors to see if you can get them to include it as extra credit if the students volunteered for your program. Post flyers on the campus that say something general like "Looking for volunteers to work with 3 year old child with autism in an in-home ABA program." Try to put them in the buildings where these students would have most of their classes. We're currently trying to recruit students from a program called the "Low Incidence Program." This program is designed to teach them how to work with children with disabilities that are relatively uncommon, autism being one of those disabilities. Many of these students will already have training in ABA so they may be able to start right away without extensive training. They will need training in the future, but it would get you started. And even if they don't volunteer to work for free, they won't charge as much as a certified therapist or clinic.
I live in Texas, and here we have a state agency called "Mental Health and Mental Retardation (MHMR)." They had a program called "In Home Family Support," which gave some families a grant to start up their home program. I have heard recently that this program has been cut, so if you live in Texas, this may no longer be an option. If you live in another state, research everything you can about state agencies that provide services to people with disabilities. You can save yourself a little time by contacting other parents or your local ARC. Find your local chapter at http://www.thearc.org. They are an organization that does advocacy work for people with mental retardation and other developmental disabilities. They may be able to point you in the right direction for finding funding through state agencies.
I recently talked with the director of a group here called the Family Support Network, and she gave me some really good ideas on how to get funding. If you can't find anyone who will volunteer for free, you may want to try raising funds to pay him or her through local civic clubs. We are working on writing letters to the area Rotary Club, Lions Club, Elks Lodge, etc. Try anyone in your area who does charity work. If you can, get a letter from your child's pediatrician, any other specialists they may have seen, the autism specialist (in-home trainer), and anyone else you can think of. Get them to write a letter stating their support for this program for your child. If they've never heard of it (my pediatrician wasn't entirely sure what it was), give them the information they need. If you have a local F.E.A.T. (Families for Early Autism Treatment) group, they can help you with getting the information. They may also be able to point you to where people have gotten funding before. The main webpage for FEAT is http://www.feat.org. They have links to all the FEAT groups around the US and Canada.
If you need money, it is out there. It's a matter of presenting the evidence and appealing to those people in your community who participate in charity on a regular basis. You probably won't get all the money from one place, but if one club sends you a check for $500 and another for $1000, you'll be on your way. We're also looking into getting several families together and organizing a fun run or "bike for autism" event. I've been told it's not that hard to start up your own non-profit organization. If you can get in touch with the other families in your school district who have children with autism, you could try and all get together and organize an event.
Here are some links to web pages that many people use as evidence that ABA is the best therapy for autism.
http://www.health.state.ny.us/nysdoh/eip/menu.htm
This one is the official guidelines regarding intervention for autistic children for the New York version of Early Childhood Intervention. You can read through it online; you'll find a recommendation that the principles of ABA be included in any intervention program for a child with autism.
http://www.madsec.org/docs/ATFReport.pdf
This is a report prepared by the Maine Administrators of Services for Children with Disabilities Autism Task Force. It states that ABA is one of the few treatments with solid scientific testing and evidence behind it.
Mental Health: A Report of the Surgeon General
This is a report from the (United States) Surgeon General's office on mental health. This will take you directly to the section on autism. Under intervention, it cites that 30 years of research have shown ABA to be effective.
Getting money is possible; you just have to think creatively. This evidence should help with convincing people that this is the best treatment for your child.
And don't forget to network with other parents. If you have a local support group, go join it. If you don't have one, start one. Many people say they don't have time, but it will actually save you a lot of time. Other parents are your best source of knowledge, and that's research you don't have to do.
As for school districts: Unfortunately, school districts are not required to pay for this unless they have been extremely negligent in providing services to your child. You can find a summary of court cases regarding this issue on the following website (Scroll down to the section on "Specific Educational Methodologies"):
For now, remember the first step in any ABA program is making yourself and the therapy environment as reinforcing as possible for your child. Find a space in your home that you can make the "therapy room," and get him used to the idea that you take him there during certain times of the day and play. Slowly build up the amount of time you spend in there; then when you formally start therapy, it won't be such an abrupt change in his daily schedule. Introducing everything slowly also takes the pressure off to get the money now or to get it started right now. It will be better for the child in the long run too. I remind myself every day that we are just at the start of this journey so if I have to start off slow, that's OK.
Good luck.
Carolyn Cordes
Note: In Georgia an additional funding source for ABA is Kids Care Connections, Inc.