Access and Choice in NY State for Autism Supports and Services

My guests today are Toni Tortora, an Occupational Therapist and the Clinical Director at the Rebecca School in Manhattan, Lori Ciesielski who is an Occupational Therapist for Liberty POST (Physical, Occupational, Speech Therapy) services in Buffalo, NY, and Galina Itskovich is a Clinical Social Worker in New York City who works with different populations, including children and adults both on and off the spectrum. All three are Developmental, Individual differences, Relationship-based (DIR) Expert Training Leaders with the International Council on Development and Learning (ICDL) where Galina is also a Clinical Consultant.

Today we are discussing the bill they put forth to the New York State Legislature to have DIR/Floortime covered by insurance, which is an expansion of the current autism bill which only covers Applied Behaviour Analysis (ABA) services. From there it could be expanded to private insurance companies that will follow the Medicaid guidelines. You can see the bill here and please sign the change.org page here. They also have a website with more information, a Dropbox with resources, and a DIR NY State Coalition is the Facebook page where you can see the Bill itself, the summary by the Senator’s office, and a sample letter that you can personalize and submit.

Bill A8548

In March 2020 this group decided to get their voices out there to have DIR/Floortime heard about in the world of insurance to give parents, self-advocates, and families more access to different approaches to supports and therapies. Then the pandemic hit. They gathered their NY DIR Coalition together later that year and met on Zoom monthly about how to go forward. They have some great Floortime experts in California who have done bill writing in the past, and Jeff Guenzel who has done this with Medicaid in New Jersey. They decided to rewrite the autism bill in NY to expand it to include DIR/Floortime rather than start a new bill from scratch.

Since then, it’s been gaining momentum. They had to have legislation, a legislator and an assembly person join, then senate support and senator sponsorship. So the bill is now out there and being read by people in congress to decide if this is something they’ll pass, Toni explains. They want to get more momentum now by raising awareness and support by non politicians in their different jurisdictions to have their assembly people and senators say ‘yes’! It’s working so far and so they hope it keeps going.

Lori says they are learning as they go along. Right now the bill is in the insurance committee, but they need a lot more support. They’re sending out lots of emails, putting things on social media, and doing this podcast. The more volume to the senator’s office and assembly person’s office, the more they have to pay attention, she explains. If they get one request, that’s nice. But if the office gets hundreds or thousands of letters about this bill, the staff person will get them to look at it. That’s where they are now: getting the word out. They’ve shared it with their social and professional groups, including the NY State Occupational Therapy Association. It’s spreading the word to help families have more choice of services.

How you can help

Lori explains that ideally you’re in NY State, voting for the constituents in office, but even if you have loved ones in NY State, hearing from you is helpful. This Facebook page they created has a drop box and all of the documents associated with it. The DIR NY State Coalition is the Facebook page where you can see the Bill itself, the summary by the Senator’s office, and a sample letter. In the sample letter there’s a link so you can find your assembly member and senate member is. Then you can print the letter and mail it in or send it in online, or email it.

Ideally, Lori continues, they want people to bring their personal self into the letter. Why is this bill important to have this bill passed in NY State? Are you a parent? Are you a professional? Are you a self-advocate? Are you somebody who cares about families having a choice and having equity in NY State? If you don’t have Facebook, there’s also a website with more information here and a Dropbox with resources. You can also email them for more information at dcny [at] icdl.com.

The Importance of Bill A8548

Lack of information Galina says that there are not many social workers practicing DIR/Floortime and that’s due to a lack of information. Floortime has been invisible to many mental health professionals, she continues, but they all know about Applied Behavioural Analysis (ABA) because the insurance companies offer you an opportunity to become an ABA provider. When an individual provider signs up with the insurance company and gets on the panel, they’re offered to see their client many times per week to work on this intense model, so they learn ABA. It doesn’t work with DIR/Floortime even though it falls very naturally into the professional culture of social work.

Lack of funding The same goes for the client, Galina asserts. They don’t have the option to have DIR/Floortime. Galina does DIR/Floortime with her patients, but she calls it Individual Psychotherapy, since it’s not funded–but it’s so much more. DIR/Floortime training gives you information for whatever profession you are otherwise licensed in. It’s practicing your profession through a DIR lens: meeting the client where they are developmentally, taking into account the client’s individual differences, sensory processing profiles, family patterns, and through a safe relationship.

Lack of choice When parents get that diagnosis and look around, usually they’ll go with what is funded. What is funded is behavioural therapies. Parents need choice and access to other options. ABA is not the solution for everyone. Autistic self-advocates as a whole are fiercely against ABA for many reasons, which we don’t need to discuss here. We want to provide choice. We deliver a developmental and relationship, play-based approach. We want to have access to the insurance companies so people will hear about it and try it. If it’s funded, parents will try it. If it’s not funded, parents don’t want to pay out-of-pocket for it.

Lack of agency It’s also about frequency, Toni says. When parents first get that diagnosis and are told they can get twenty or more hours per week of support, they want that. But we are saying that there are other ways besides this one approach, she continues. It’s not just about someone coming to your home or you bringing your child to a clinic. Our approach is about your learning as well, and the child or self-advocate’s learning who they are. It’s not just about doing, but about support. We want developmental models to blossom in New York State. It’s not just about helping, fixing, and treating. It’s about choice as a person to decide what works for you. We want the relationships to flourish: with the child, with the practitioners, and with everyone involved.

Galina adds that DIR/Floortime goes along with a client-centred approach and with early intervention. But it’s remained invisible. Insurance companies haven’t heard about it. It’s about choice, so we want to expand and become visible.

Access

I asked Toni and Lori what it means for Occupational Therapy (O.T.), where they are working with a child’s sensory sensitivities towards sensory integration, working on motor planning and gross and fine motor functioning, etc. Toni says that in a school setting, it’s really above and beyond O.T. Every child has an Individual Education Plan (IEP) and they get O.T. But with DIR/Floortime, the DIR/Floortime O.T. also supports the knowledge and learning of all of the players involved with this child from the parents and family to the teacher, speech therapist, and other therapists and practitioners on the child’s team.

Lori, who works with the public system in home and school community support, says that families might know they want DIR/Floortime services, but can’t directly request a specific provider. They can seek her out by saying they don’t want ABA and will likely get placed with her. If you don’t go to a specialized school that provides DIR/Floortime services, you are getting behavioural services in the public schools. You can get specialized DIR/Floortime services through insurance providers after school, which will provide further supports, if insurance covers this.

There are a lot of DIR-trained practitioners who are in the state of NY, but many have to rely on clients who pay out-of-pocket. This bill wants to expand services to anyone who wants it, just not to those who can afford it. It’s about access. Toni adds that so many times they see kids who would benefit from Floortime, but if you’re a family who can’t afford services, we cannot expect the family to pay for them. This bill is about getting DIR/Floortime out there, teaching and supporting families in what development is and how to play. You can see so much developmental progress in the child and change in the parents that support the child’s progress with DIR/Floortime.

The Time Crunch

We are asking for people to voice their concerns during this legislative session which ends in June so that this bill can pass. It is a time sensitive thing, Galina says. If it happens, it happens between now and June. If not, it waits another year, so someone who is turning 2 will be turning 3 next year. This is a developmental window we don’t want to miss, Galina states. We want the parents to share their success stories. Toni brought up the family whose 4-year-old is going through the terrible two’s and how we celebrate that. I expressed how my child went through that stage even later than age 4.

DIR/Floortime allows parents to accept their child and support their child’s progress from where they are at and many parents want this versus looking at a developmental chart and seeing the milestones that a child should be at for each age range. Often, our children don’t meet those timelines. They move through those developmental stages much later. This is why this bill is so important. Families want and need this support that is different from approaches that force children into skills they are not yet ready for developmentally. It’s a holistic approach, Galina adds. DIR/Floortime is multidisciplinary/interdisciplinary/transdisciplinary.

Say ‘Yes’ to Families

DIR/Floortime is a family approach. There are siblings. Sometimes there’s more than one sibling with a diagnosis. DIR covers the issues that families face when they get a diagnosis. I did a podcast on Floortime with family and small groups. This bill is about choice. Right now there is not a choice in New York. Please follow the links in this post to help get DIR/Floortime funded by insurance companies so everyone has access and choice to services and supports.

Thank you to Toni, Lori, and Galina for getting the word out to promote choice in New York State for autism services funded by insurance. Please sign the petition and do what you can to spread the word! Please share this blog post, podcast, and YouTube video on Facebook or Twitter to get the word out. See you back in two weeks.

Until next time, here’s to choosing play and experiencing joy everyday!