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Benefits of Occupational Therapy for Tourette Syndrome

Ask the MAB

Jan Rowe, Dr. OT, OTR/L, FAOTA is Coordinator, Tourette syndrome and Tic disorders program at Children’s of Alabama and is a member of the TAA Medical Advisory Board.

Q: What services would an occupational therapist provide to a child with TS?

A: Services by an occupational therapist (OT) would vary based on the knowledge your OT has regarding tics and TS. Most OTs will treat children with tics using a sensory approach. This works but it is much slower at producing results for children with tics/TS. Some, but not enough OTs have been through the CBIT training to work with children and adults. That said, CBIT is based on cognitive behavioral therapy and many OTs have extensive education and experience using a cognitive therapy approach with their patients.

Occupational therapists work with individuals (children and adults) who have limitations or interruptions to their daily life activities or ‘occupations’. If your child’s tics, ADD or OCD interferes with his/her ability to perform their daily occupations an occupational therapist can be beneficial.

Q: Would OT services always be obtained through the school system? Is it the school systems obligation to pay for the services? Would the same regulations apply for public and private schools? If not, what other ways would a parent go about getting OT?

A: The school system OT is the ideal practitioner to treat your child with tics and TS. The fact your child is in school 7 hours a day facing many of the anxieties and challenges which exacerbate tics- it is an ideal setting to provide the therapy. Even if the OT serving your child’s school hasn’t been trained in CBIT there are many benefits they can provide (organization, time management, social relationships). Only a few OTs have been trained in CBIT and many of these therapists are not school based therapists. Thus, the likelihood of your child receiving CBIT by a school based OT is slim. Many children with tics and TS are not on the OTs radar at all which is unfortunate. You as the parent will have to push to get an OT to evaluate your child and maybe because of issues related to comorbidities and not their tics.
Not all children with tics/ TS have an individualized education plan (IEP) but this does not preclude an OT from seeing your child. Your child can be seen by an OT under a 504 plan as well. This is a good idea to think about for your child. Not just for therapy but for accommodations that may be needed at some time in the future. Think of it as a ‘safety net’.

If your child can not be served by the school system you may be able to get the public school system to pay for outside services if they cannot provide the service to your child. This is usually done easily and may require legal assistance to make it happen. Private schools do not have to provide anything to your child. Often they will accommodate an outside therapist coming in to see your child for services but they do not have to provide it. Homeschooled children and children who attend private schools can receive OT services, if eligible from the school system they are zoned for. If this occurs public school system your child would attend pays for the service.

If your child is not eligible for OT services you can always seek out a private practitioner at your local children’s therapy programs or hospital. They can work with the school to ensure your child gets what he/she needs in the school setting.

If a parent does not agree with the school’s determination of whether or not their child needs OT and they get an independent evaluation, will the new evaluation be honored by the school? Who would have to pay for these services, the parent or the school?

For many years now I have provided independent evaluations for school systems throughout the state of Alabama. In most cases the majority of my recommendations are honored by the school. If this is a contentious situation between school and family and if lawyers are involved there may be a settlement reached. In this case the school agrees to abide by outside evaluation recommendations. If this situation can be avoided it is advantageous but not always possible.

If your child tics, TS, ADD/ADHD or OCD is interfering with his/her ability to be the best student they can be (in all aspects of education- not just academics) you may have to seek assistance. If the parent requests an independent evaluation the school pays for this. As a parent you will have input to who is contracted for the independent evaluation. This means it doesn’t have to be who the school suggests.

Q: Can a parent get a different occupational therapist if they are not satisfied with the work the school’s OT is doing?

A: This is a tricky question because many schools have one OT who covers the entire school (K5- 12th grade). In some cases one OT covers an entire school system meaning they may only visit your child’s school one or two times a month. That said, if your child isn’t’ getting what he/she needs then you should push for more services and let the school determine how they will provide those services. Your responsibility will be to document why you are not satisfied with the current OT services. This can range from lack of services to inappropriate goals, lack of measurement of goals or a lack of apparent skill in working with your child. In any case you are probably going to need outside help for this. Many parents give up and pay for private therapy because the delays and battle with the school are too exhausting. You need to know what your child’s rights are and then fight to get it.

Q: We often hear of OT services being used for children with TS, can adults with TS also benefit from seeing an OT? If so, in what ways?

A: OT can be useful for adults with TS as well. If the OT is trained in CBIT and the adult has not been through a CBIT program that may be one avenue of service. Another is to work with the daily activities/occupations the person is struggling to meet due to tics. Just like children adults often have difficulty organizing/prioritizing, managing their time effectively and even with social relationships. These are all aspects of a person’s life an OT can help with.

Q: An adult with TS would have to pay for the OT services on their own or through insurance. How would an adult with TS determine if they could be helped by seeing an OT and who would evaluate or refer them? How does the insurance decide if they pay for these services?

A: Yes, an adult would have to pay, or their insurance would pay for the OT services received. The person can be self -referred, in most states to be evaluated for OT services. In this evaluation the person can discuss with the OT what benefits can be expected from treatment. If services are determined to be needed and wanted then a physician’s referral is necessary for treatment. Insurance companies will pay for OT services in most cases, as long as the person has OT coverage with their insurance policy. It is important to note there may be a limit on OT services according to the plan (per event or per year).