Autism Providers MA and Autism Services

There aren’t too many personal blog posts that I write here on Metrowest Mamas, but I have had some pretty hard experiences dealing with a family autism diagnosis. In experiencing difficulties with our Massachusetts ABA provider to realizing the huge gaps in protections for families in Massachusetts, I wanted to share my story with ABA provider Foundation Lane in Waltham. Perhaps it will help another family navigate Autism Providers MA and ABA Providers in MA. Most importantly, I hope it will start a movement in Massachusetts to change some Autism Services laws.

Autism Agencies in MA

Our family member received a PDD-NOS diagnosis last winter and we began searching for ABA providers. We found an up-and-coming company called Foundation Lane based in Lexington. Ultimately, we chose that company because they could begin services immediately as compared to other companies that had a long wait list. However, we did end up waiting. The owner admittedly oversold her services and had a lot of people sign up with her. Thus, she did not have the staff support as promised. It wasn’t until June that we began services with two staff assigned to our family. It was a tough time after a diagnosis and during the gap before services begin. I recommend reaching out to Autism support groups to get you through this period, and check out your local library for books to read.

We were so happy to finally begin services with Foundation Lane. However, in July, the first staffer assigned to our family case quit, due to the long drive she had. We got another person to fill her place. The next month, however, the other original staff person announced she was going on maternity leave after spending the summer calling in sick with a tough first trimester. We opted to begin with another person at that time to take her place, as our child was beginning preschool and we hoped to have continuity through the school year, though we missed her a lot. However, our child was going to have new teachers at preschool so it was a good natural break to introduce new staff.

For two months we had a good run of people not quitting, but our child started to have more behavioral issues. After meeting with his developmental physician, we were advised to have more services provided during the school session and less in the afternoon. The 4 hours of preschool followed by intensive ABA services for 4 hours in the afternoon was causing his outbursts. As a little 4 year old boy, it was too intense. The insurance company agreed, so we managed to get approval for behavioral and social services in school. It also targeted his social shortcomings with peers. We reached out to Foundation Lane, but the owner Janine Lane denied our request for new staff to support the physician directive.

We were told that she did not like us changing the schedule and she couldn’t and wouldn’t provide another staff to manage the shift and the additional hours required. Granted, our requests for changes in the schedule were due to his beginning preschool (which was clear from the beginning) and we didn’t foresee the issues that arose regarding school. Just a couple of days later, the other staff person said she wasn’t comfortable working for us any more. (In case you are keeping track, we had three staff turnovers in 4 months.)

To be honest, I was in shock. Weren’t ABA providers like Foundation Lane supposed to care about our son and not about a schedule? Weren’t ABA providers supposed to care about the well being of our child and provide a duty of care? How can I trust any ABA provider to stick with us, and any family, navigating their child’s autism diagnosis, and as their child grows. I couldn’t have been the only family with a child starting preschool negating a change? I couldn’t be the only family with a child’s whose behavioral needs shift? And I had nowhere to go for help.

We met up with our son’s developmental physician again. She assured me that what I had been through with Foundation Lane was rare and that most families love their ABA agency. She also stated bigger agencies, with their own issues, are able to handle changes (and expect them) unlike smaller providers.

I learned a lot in this process and here is a blog post about the questions you should be asking, the documents you should be saving and the records you should be keeping when searching and working with Autism Providers in MA.

All in all, what I learned the most, is that, in Massachusetts, there are no ABA provider standards, especially as it relates to in-home services. That plumber that is fixing your toilet has more oversight than the person that is impacting your autistic child’s future. That aerobic instructor in your local gym has more certifications and training hours than your average ABA professional working with your child on a day to day basis. You could have a recent college graduate who studied french literature providing your child with autism services just a few weeks later after some in-house training that can vary from ABA agency to ABA agency.

{Yes, really.}

After speaking to a couple of staffers and Massachusetts legislators, I realized our governmental leaders don’t understand the full issue that Massachusetts Autism families are experiencing. I have also have conversations with insurance representatives and clinicians who also are in awe of the ‘wild-west’ “mentality” of this area of in-home mental health services for children.

Massachusetts had an Autism Commission a few years ago and they issued a report about access to ABA services, but I think the legislature needs to revise that task force to study and issue legislative action items in overseeing the QUALITY of ABA services provided to Massachusetts families.

The first thing they should review is creating and setting standards for a consistent level of training and qualifications for ABA providers. Next, there should be the ability of families to have an state agency where they can file complaints.

While opponents may claim that the Commission’s recommendations may lead to a shortage of staff, it is easy enough to draft language and laws that enable companies to strive toward the state standards by, say, 2017, to gear up and train an adequent amount of providers for the needs of Massachusetts families. Requiring certifications or licensure for ABA providers can result in a fee (you have to pay a fee to get a gun license) and that fee can be used to operate an agency or assign staff to handle complaints, with minimal state funding.

At a minimum, this conversation needs to happen. That is why I am hoping you or someone you know will sign this petition at Change.org. I want to bring it to the State Legislature before the end of this legislative session to urge them to revise the Massachusetts Autism Commission. The Massachusetts House and Senate will be issuing their budgets soon and there is an opportunity to add the revisal of the Autism Commission in an outside section in the state budget, so in the fall, the Commission can hold meaningful hearings and recommendations for the next legislative session to consider.

This may go nowhere, but I wanted to do something. When I share my story with family and friends, they often have their own stories to tell about the ABA process in this state. If all of us are fed up, it just takes one person to try to change it. But let me be clear, many ABA agencies and providers are hard working individuals who love the work they do and the changes they make. This is not meant to be a reflection of those dedicated people. Rather it is meant to support those people and follow their lead. But our experience with Foundation Lane was horrible.

Massachusetts has no clear or consistent oversight or standards for ABA providers. If a family is wronged or harmed by a ABA provider, there is no clear path for assistance. We had nowhere to turn when we had our problems with Foundation Lane. One ABA provider can have different standards and training for staff than another ABA provider. Plumbers and Estheticians have more oversight in Massachusetts than ABA providers, so your toilet and skin is better protected than your autistic child. It is important for Massachusetts families seeking and needing at-home autism services to have a consistent level of training, certification or licensure of staff providing autism services to their families.

What are your experiences with autism providers and services in Massachusetts?

Note that this post is based on my personal reflections and does not represent those of Metrowest Mamas. My thoughts are based on my understanding and experience with autism services in MA. You should review applicable laws as they may affect you. While there are national organizations with standards and guidelines, my understanding is that they are voluntary and in many cases, don’t offer solutions for consistent training, licensure and standards for in-home services, which differs from that in public schools or other public programs. You should read these resources to make your own decisions.  
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Comments

  1. I spent a few years as an ABA therapist in California. I can say from that experience that this is totally common not just in massachusetts.

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