Mama and Dad

Hi all -- Ellen at To the Max has a contest where American readers can win a $50 CVS pharmacy gift card by sharing game and play activities that promote their child's development. Many of Ellen's followers have shared their tips in the comments section.

Enjoying the small things is an exquisite blog where a mom of a new baby girl with Down syndrome recounts her experiences in words and stunning photography.

A couple of weeks ago, this question was posted on the BLOOM blog in reference to a post about inappropriate conduct that occurred at a private ABA centre.

If a person wanted to check credibility/incident reports on an establishment that is involved with special needs children, where do they call? Do all therapy centres and daycares have to be registered? And with who?

Here’s a response from staff at Bloorview nursery schools, which applies to Toronto and Ontario (readers elsewhere will need to check requirements in their jurisdiction):

All daycares must be licensed with the Ontario government and the results of inspection must now be posted for public view. There is a graph to show areas of compliance and non-compliance by percentage.

As for credibilty/incident reports, it is our understanding that the difference between applied behaviour analysis (ABA) and (intensive behavioural intervention) is that ABA settings are funded in such a way that they can accept payment through private-health insurance. Other than that, we think there is very little regulation. Both ABA and IBI programs should have a psychologist attached to them. If they don’t, that would be a red flag for parents.

The challenge for families is understanding which programs have checks and balances such as registrations to operate, annual inspections and reporting duties that can be accessed publicly. In the field of children's services, IBI-ABA services for children are relatively new. The number of not-for-profit programs has not kept pace with the profit-based programs and services. There are many private programs, schools and preschools around that 'specialize' in the services of IBI-ABA. As the non-profit options seem so limited, families they have to work with what they have. Parents trust that the service providers operate all parts of their program at the highest possible standards, using the most up-to-date methods and trained staff. We know this is not always the case.

The program spoken of in the blog was defined as private. However, if a parent was unsure of a program's status, our advice would be to:

Ask if the program/service has any provincial/state or city funding. A “no” to both probably means the program is private and has less formal public reporting structures regarding credibility/incidents. If the answer is “yes,” there is likely a way to check the history of a program. A parent would need to call the ministry or department the program is funded through (for example, Ministry of Health, Ministry of Children and Family, Toronto Children’s Services). For programs with no funding ties to tax-payer dollars, parents are on their own to ask the “what if” questions.

The conduct that concerned the parent in the blog could also be reported to the therapist’s respective professional colleges or universities.

In Toronto, the Geneva Centre for Autism can provide helpful advice to parents.

Parents of children who don’t speak fear their child’s vulnerability. When your child is non-verbal, he can’t tell you if something bad happens at school, in the community or with a worker. Last week I received an e-mail from the mother of a four-year-old boy with autism. She wrote to tell me that while receiving ABA therapy at a private centre, inappropriate photos of her son were taken. She shares her story in the hope that by alerting others parents to the potential for abuse, she can save another family from going through a similar experience.

My son had been going there for a year and every session I would stay and wait for him. I could hear him scream through the walls and they would tell me he needs to ‘pair’ with his therapist and it’s his ‘behaviours.’ In October there were changes and we had a new therapist. Her first day with my son she came running out of the therapy session into the waiting room and asked if I had a camera. I said no and why? She asked the administrator, who said yes, take my iPhone. The therapist said: “Your son is painting, he is covered in blue paint so I want to show you” and ran out of the room. Over the next little while she returned the iPhone to its owner and I asked to see these pictures. I was in shock to see my son standing in his diaper covered in blue paint, crying. There were many pictures taken. But none of him actually painting, just of him crying with blue paint all over him. There were pictures of him being cleaned up and pictures of him naked: three full frontal photos. I felt sick to my stomach.

Does my child not have a right to privacy? When you send your child to school do you expect them to be painting in their underwear or diaper? Why would someone take pictures of a child naked? My son could have been cold for two hours, standing in his diaper. When your child is non-verbal, he can’t tell you what’s happening. The guilt I feel that I trusted this private centre with my child is unexplainable. Our local children’s aid is investigating this case and the police said that while the photos are not pornographic, they are inappropriate. No apology or explanation has been given to us by the director of the centre. I would like to educate as many parents as possible to prevent this kind of horrible occurrence from happening to another child.

Following are precautions I've learned to take in choosing a private therapy centre or daycare:

Call your local children’s aid to ask if any incidents at the facility have been reported, or if the facility has been the focus of an investigation.

Ask to see qualifications of the person working with your child.

Check references yourself. Don’t be afraid to make enquiries with the police regarding records.

Expect timely responses to your concerns and questions.

Before committing yourself to a facility, ask to speak with other parents and view the facility while in operation.

Make an unannounced visit to get a realistic view of how the place runs and the involvement of the senior staff or directors.

Be involved. Don’t take a kind smile as proof that your child is well taken care of.

If you can view your child under someone else’s care, do it.

Look for sudden changes in behaviour in your child. You know your child best.

Read contracts carefully and don’t be afraid to question.

Share information and network with other parents.