Parents of babies and young children with disabilities have a lot to learn very quickly. Most are new to the mystifying ‘world of disability’ and can be vulnerable to unscrupulous practitioners and agencies who need to keep money rolling in.
There are also well-meaning practitioners who offer their services but are not properly qualified to do so and might even want to experiment on your child. Whether their motive is income, wanting to push some new theory, or just an urge to be helpful, the risks to the child and family are just the same.
Parents who are wealthy, or who manage to scrape money together (even selling their house, sometimes) and those who have grants or allowances from local or national government schemes will exercise their right to purchase whatever therapy they feel is appropriate. They are consumers in an expanding market place and can do as they wish. It is a market place with a rich mix of public services, charities, NGOs (non-governmental organisations) and private therapists, agencies and companies. There are competent professionals in each of these services.
But how will new parents know what is valid and what is bogus? How will they separate effective therapy, treatment and education programmes from Extravagant Promises Therapy? Where can they go for help? Who has a responsibility to help them in this?
To avoid being misled or cheated, every one of us, as consumers, must be watchful and cautious. We must exercise judgement to the best of our abilities. But some parents of disabled babies and young children are hampered by extremes of hope, despair or guilt – perhaps all of them together. These emotional states are not a good basis for cool decisions about committing to some new therapy that will have consequences for the child’s health, development and learning and for the wellbeing of the family.
These emotional states might lead some parents to believe that the more they spend for this therapy, the greater distances they travel, the more hard work they (and their child) do, the more sacrifices they make, the better will be the outcomes for the child. And parents can feel at last they are in control and taking positive action.
It can be, if there are two parents, that one is overtaken for the time being by these psychological states while the other is not, and then conflict can arise about the best course of action. Parents who have someone they trust to discuss these issues with will be in a better position than those who do not.
Are there danger signs that you as parents can look out for?
Well first of all, do not be taken in by the therapists you meet being ‘very nice’. They are bound to appear warm and welcoming whether they are genuinely caring or motivated by fee income.
Look carefully at what sort of assessment they offer. A valid assessment will look at all aspects of your child’s health and development and will suggest courses of action for you to consider – whether or not they are available from this therapist or agency. An assessment that should ring alarm bells will only suggest which particular services you buy from this therapist or agency. It is unlikely to suggest other sources of help or tell you their therapy is not appropriate for your child.
Notice what sort of partnership they ask you to enter into with them. Some therapy and treatment programmes require you and your child to work on them ‘as often as possible’, perhaps every day or several times a day. This sort of partnership can lead to you being blamed for not working hard enough if the child does not progress.
Another danger sign is the therapist or agency not wanting to link with the other people who are already supporting your child. Their preference then is to work in isolation without considering properly whether their approach fits with the others. There are great risks here for the child.
Of course, therapists and agencies who want to recruit as many new clients as possible will keep an impressive list of satisfied customers. Do not be taken in by this because they will not tell you about children who did not progress under their care or children whose condition worsened.
If amongst all the people you talk to about the proposed therapy, the only positive comments come from the therapist or agency, then beware.
Who has a responsibility to support parents in choosing therapy, treatment and education programmes?
Those of us with recognised qualifications who support children and families in our work for a public service or established charity or NGO carry this responsibility. This should be an integral part of the support we offer because we are familiar with the world of disability while new parents are not.
Perhaps the first step is to let parents know there is such a thing as Extravagant Promises Therapy and that there are unscrupulous people who will try to take advantage of them. You could also show them this article or any other similar information you have come across.
While we should never try to offer advice to parents of the ‘what I would do if I were you’ sort, we must be available, if asked, to help parents get information and then discuss the pros and cons fully with them. If you are a professional the parents know well and trust, you will be in a good position to help in this way.
The following is an extract from Horizontal Teamwork in a Vertical World: Exploring interagency collaboration and people empowerment (page 91) which borrowed from an original article in PMLD Link*
Three paediatric NHS therapists collectively answered the question, ‘So what criteria can we use to distinguish between therapy that is thoroughly professional and that which is not?’ as follows:
This is an important question for everyone working in ECI, partly because some therapies might do more harm than good – the last thing any of us want for disabled infants and vulnerable families. It comes down to what is known about the therapy, how the therapist is trained and supported and how he or she operates.
The first question must be about the clinical evidence base for the particular therapy as applied to a particular category of need whether in skill development, improved wellbeing or enhanced environments. If there is no valid information then we should not support it. Training is critical and we must never equate professional training over a number of years, perhaps at graduate level, with skills learned over a few weekends or at a summer school! In the UK, all NHS therapists are registered with the Health Professionals Council and must make a declaration every two years that they are up to date with innovations in professional practice.
A professional therapist will begin with an appropriate assessment, discuss the results with the parent to agree a course of action, integrate her work with any other interventions being offered and measure outcomes. She is accountable to the child, the parent and the agency that employs her. When she has uncertainties, these are acknowledged and dealt with in supervision.
Agreeing the dangers inherent in unprofessional therapy, the writers made the following recommendations:
1. To help protect children and families, the paediatric world should promote awareness of two categories of therapy:
- Professional therapy with an evidence base, properly qualified therapists and accountable and responsible delivery.
- Other therapies which do not meet these criteria.
2. This distinction does not necessarily conform to statutory and non-statutory (whether 3rd sector, i.e. charities and voluntary organisations, or private agencies).
3. Paediatric NHS therapists should support parents in learning about and making judgements on any additional therapy interventions and be willing to work with, when appropriate, additional professional therapists.
4. Therapists, other paediatric practitioners and parents would be greatly helped in the above by an official register of professional therapy and therapists or the promotion of existing registers.
5. Authorities that allocate budgets to parents should restrict their use to professional therapies on the register.
6. Local councils and NHS trusts should strive to agree contracts with local registered therapists, whether 3rd sector or private, to ensure they will, as appropriate, work in partnership with others around the same child in pursuit of an integrated whole-child and whole-family support system. Turning for additional support to the 3rd sector or private agencies should not automatically lead to fragmented and disjointed support.
* See Limbrick, P. with Boulter, L., Wassall, L. & Rimmer S. ‘What do the terms ‘therapy’ and ‘therapist’ really mean in early childhood intervention for children who need on-going interventions?’ in PMLD-Link, Vol. 23, No. 3, Issue 70
This whole subject in my view is fraught with difficulty. Have you written a better account than this one of mine? Do you know of a better account to support families? Would you like to write something on this subject for the TAC Bulletin?
Peter Limbrick, October 2017
Cartoon from TAC Bulletin Issue 207: