Parents must agitate for better care and policy change

By Lara Pickford-Gordon,  lpgordon.camsel@rcpos.org

Parents and interest groups have to work together for children with hidden disabilities. That was the position held by speakers at the Catholic Religious Education Development Institute’s (CREDI) ‘What you cannot see’ hidden disabilities conference May 17 at the Government Campus Centre.

In his presentation on ‘Hidden Medical Disabilities’ pediatrician Dr David Bratt said as a medical doctor there was only so much he could do. He “fell into” responding to hidden disabilities because of cases seen at his clinic. Although he is “semi-retired” he still runs a small clinic and every week there is one child with a developmental problem requiring special education.

He said, “The saddest thing I had to do with parents is tell them ‘you on your own now, I can just do so much’. The truth is, with disabilities, apart from the medical ones, it is the special ed teachers who are going to make a difference”. Developmental pediatricians can help but they were scarce in this country.

 “Parents have to get down and agitate. We need parents, teachers, and everybody to start pulling together. I am hoping CREDI… I don’t know if you all are willing to take up this leadership role,” Dr Bratt said.

During the Q and A, Dr Tim Conway, neuro-psychologist and educator, Morris Centre Clinics, Florida and T&T, said, in the past five years new laws were introduced for the early identification of dyslexia, better service for children with dyslexia and training for teachers. He gave the US States of Florida and California as two examples where action was taken as a result of agitation by parents and professionals. Dr Conway said, “That is the time when you started to see real change happen.”

Dr Launcelot Brown, professor and department chair, School of Education Duquesne University US also urged parents to lobby.

Developmental and Early Intervention Specialist Dr Lenisa Joseph said there are different organisations doing great work. She said that. “A lot of noise means change…It happened in the UK; it is happening currently in different regions of Africa. It has happened in Australia. Parents and professionals are partnering but it does not happen if we continue to operate in silos.”

Involvement may be spurred by a parent’s concern for the particular issue facing their child but organisations had to work together “to lobby for change and the change has to be not for any particular disability. It has to be that we partner for all.”

Specialised therapy needed

In his presentation Dr Bratt highlighted different medical conditions which can affect a child’s learning. Two major causes for children falling asleep at school are sinus (allergic rhinitis) and asthma. A petit mal seizure can appear as if a child is daydreaming or sleepy; this can cause someone to lose contact with their environment for 30 seconds.

Dr Bratt said children with “high risk” for disabilities were babies with low birth weight, jaundice and hypoglycemia. The problem is not identifying them but setting up a system for follow-up. He noted health centres do not do developmental assessments and the children’s clinic is held once weekly when between 30 and 40 children are immunised. The nurse does not have the time to ask parents questions such as if the baby is responsive or rolling over.

In addition, not enough specialised therapy is provided in the pre-school years so children lag behind. In the absence of a system he said the first defense in identifying issues was “parents”, then doctors, and schools.

Dr Bratt estimates medical disabilities to be just one in ten cases and the rest psycho-social, educational issues. A big problem is denial. He said there were parents who “disappear” after being told their child may have autism or is not developing well due to a problem with motor skills.

Dr Bratt called for the establishment of a multi-disciplinary team of professionals– pediatricians, special educators, psychologists and social workers –to develop individualised educational, medical and social plans to diagnose children as soon as possible, and support and counsel the parents. He also called for a public awareness campaign, legislation and a centre for research.