How can parents make good therapy choices?

Despite the goal of the World Health Organization to promote Universal Health Coverage (https://www.who.int/health_financing/universal_coverage_definition/en/), we see an increase of offerings to contract private therapy in many countries as public services are getting reduced or cut. Parents are expected to choose a provider to support them and their child. The asymmetry in expertise and knowledge between customer and service provider and the high stakes every parent has in wanting the best for their children puts them into a vulnerable position to take financial risks. Here are some thoughts (personal and not my employer’s) about what to consider when deciding about which service provider to choose.

By no means these ideas are to be understood as an endorsement of a privatization of services that address a common good, such as are healthcare and education. Many of the points addressed here are also valid when engaging with public funded therapists.

If you want the quick version, check out this Infographic kindly provided by Rachel Martens (@RaeofSunshine79):

1.) The right questions:

Before you start looking into different providers and options, be clear about what are your main questions — what type of help and advice are you looking for? Do you have questions regarding diagnosis, assessment, intervention (and for what issues or challenges)? The more you can be specific about your needs and goals, the better you can focus the search for help. Talk to the professionals that already know your child and family such as the family doctor, pediatrician or the teachers. Exchange information with other parents and make use of your local and provincial parent organizations to prepare yourself. Also consider what you need as a family to support your child. Your own wellbeing is paramount for the healthy development of your child, their siblings and your partnership.

2.) The right fit:

When you start any type of therapy, you are starting a new relationship. This means that you need to get along well with the therapists. This is often difficult to assess when you meet a person for the first time. Therapists should offer several appointments to get to know each other before committing you to a longer-term contract. If you feel that it is not a good fit, you should be comfortable in saying so and receive suggestions for alternatives. It is ok not to have any specific facts or reasons and make this decision based on your gut feeling!

3.) The baseline assessments:

Every therapist needs to know where to start from, and therefore will suggest having some baseline assessments in order to get to know your child’s situation and be able to monitor the progress and adapt their therapy and goals accordingly. As you already have received a diagnosis for your child, it is not necessary to repeat the whole diagnostic process again unless you feel the diagnosis is not appropriate and are looking for a second opinion. As parents, you need to know what assessments have been done already, and wherever possible have copies of those reports or at least (free) access to them. If you did not receive reports directly, ask your family doctor for copies. Start a binder with all the information that is relevant to your child. Here is an example how to set up such a binder: https://www.canchild.ca/en/research-in-practice/the-kit-keeping-it-together

When there is an electronic health record, ask how you can access it.

4.) The goal-setting:

Goal-setting — led by the family when they feel comfortable to do so — is probably the most important component for a successful patient-therapist relationship. Goals need to be negotiated, agreed upon and shared by the child, parents and therapist. You all need to be on the same page. Developmental or rehabilitation goals cannot be prescribed. They must be meaningful for the life of the child and their family and contribute to improving the child’s participation in school and family life. Discuss possible goals with those clinicians and physicians that already know your child before searching for providers. If proposed goals don’t make sense to you, you have the right to ask for clarification and to reject them, if this does not convince you. An example is the F-words Goal Sheet to help you list what is important for your child and why. You can find it here: https://www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability/f-words-tools

5.) The team approach:

Children with developmental disabilities are often complex young people, and most of them require the support and input from more than one professional or discipline. Examples are Behavioural Therapists, Early Childhood Resource Specialists, Nurses, Occupational Therapists, Orthotists, Physicians, Physical Therapists, Social Workers and Speech and Language Therapists among others. Does the service provider offer a team approach? If they do not have a team on site, how do they involve other professionals? Do they attend case conferences? Do they share their reports? Do they seek others’ reports and opinions? This should be part of the therapy approach, so parents are comfortable in requesting team meetings and input from other professionals.

6.) The therapy options:

You will find a multitude of therapy options out there and strong advocates/critics for all of them. It is not easy to find out which of the therapies would be best suited for you and your child. Often it is helpful to obtain advice from experienced professionals that are not financially dependent on the recommendations they make. Your family doctor, paediatrician and developmental paediatrician might be helpful partners to discuss these options. Besides having information about the scientific evidence of certain interventions, it is also important to assess how the intervention matches your needs and goals. Even if you chose one therapy that seemed to be very appropriate at the beginning, it might be that it does not show the expected results with your child. It is ok then to move on and try a different approach. Therefore, it is important to assess at the beginning if your provider does offer different therapeutic approaches in their service or in collaboration with others, or only supports one type of therapy. Remember: “If your only tool is a hammer, every problem looks like a nail” (unknown source)

7.) The success:

How will you know if the therapy is working? When deciding about goals for your child and your family it is important to also agree with the therapists about ways to assess if those goals were reached. Engaging other clinicians that know the child but are not directly involved in the therapy might also be helpful to decide about what to measure. Remember that a goal needs to be meaningful to you and your child! The point of therapy is not simply to change some test scores. Decide how success is measured before the therapy starts. This helps you and the therapist to make adjustments and to decide if continuation of that therapy is warranted.

8.) The changing/developing child and their changing needs:

As children grow, develop, learn and change, so too do their needs. This requires a reassessment of needs over time — perhaps to change the goals, perhaps to have a ‘therapy vacation’, perhaps to stop therapy because the goals have been reached. Families should not expect, or accept, a prescription for ‘therapy for life’!

9.) The prices:

For many families it is a completely new and unusual situation to get out and “buy therapy” for their children. What is seen on one hand as the ‘freedom of choice’ can also be a very challenging situation — having to navigate a marketplace without having the knowledge to identify differences in ‘products’ and how the prices attached to them are justified. The more you have clarity about the points outlined above, the better prepared you will be to ask the right questions and negotiate what you expect to receive in return for your money.

10.) Summary Checklist:

I am thankful to Peter Rosenbaum, Ronit Mesterman, Julia Frei, Gillian Hogan and Kassia Johnson for adding ideas, challenging me and editing!

Update May 2020: With Dr. Mohammad Zubairi I joined a Podcast at PONDA to discuss these ideas further. You can find it also here: https://www.podbean.com/media/share/pb-qb7j4-da388f?utm_campaign=u_share_ep&utm_medium=dlink&utm_source=u_share

Developmental Pediatrician Olaf Kraus de Camargo tweets about #SpecialNeeds and #Disabilities - views are my own, not my employer's —

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