Better integrated services in response to the needs of children with an intellectual disability or an autism spectrum disorder
Québec City, March 24, 2015 – Today the Québec Ombudsman released an investigation report on its findings and recommendations concerning the health services and social services provided to children with an intellectual disability or an autism spectrum disorder. In the Québec Ombudsman’s opinion, these children must have access to the required services in response to their needs, without being hampered by rigid rules based on the kind of impairment.
The report therefore covers access to rehabilitation services and service continuity and dovetailing between health and social services centres (CSSSs), rehabilitation centres for physical disabilities (CRDPs) and rehabilitation centres for intellectual disabilities and pervasive developmental disorders (CRDITEDs).
Main findings of the investigation by the Québec Ombudsman:
- As it now stands, in each of the regions there are several distinct institutions that provide services to young people with disabilities: CSSSs, CRDPs and CRDITEDS, with CSSSs for intake, assessment, and response to general needs and referral to rehabilitation centres (CRDPs and CRDITEDs), which then take care of specialized rehabilitation services.
- The first signs of an intellectual disability or an autism spectrum disorder often involve language or motor skills, elements which could also be connected with possible physical disability.
- Often it takes a very long time to confirm a diagnosis of intellectual disability or autism spectrum disorder. Before a diagnosis is confirmed, children are often referred to one or another rehabilitation centre so as not to delay their access to the specialized services they require.
- CRDPs and CRDITEDs alike have long waiting lists; generally, it takes several months before services are provided.
- For a child first referred to a CRDP and whose intellectual disability or autism spectrum disorder diagnosis is confirmed subsequently, CRDP services stop and the child is re-directed to a CRDITED , only to be put on another waiting list. There is therefore a lack of service continuity at a crucial stage of the child’s development.
- The Québec Ombudsman saw that there were difficulties accessing professional rehabilitation services (speech therapy, occupational therapy and physiotherapy) in CRDITEDs. In the six regions that the Québec Ombudsman looked at, access to professional services in CRDITEDs was markedly below that in CRDPs.
- Many children have a physical disability as well as an intellectual disability or an autism spectrum disorder and, as a result, need side-by-side services from both kinds of rehabilitation centres. The report revealed the lack of service dovetailing between CDRPs and CRDITEDs for children who require services from both kinds of institutions. In these situations, linkage with a view to providing properly integrated services is often not easy.
Starting next week, the health and social services network will undergo major changes, in particular, regional mergers of many institutions. The Québec Ombudsman sees this as an opportunity to improve the fit between the various services offered to children with disabilities.
The Québec Ombudsman’s recommendations to the Ministère de la Santé et des Services sociaux
- To foster service coordination: Designate a front-line navigator (pivotal resource) as soon as a child enters the system and produce an individualized service plan whenever services are required from several providers;
- To aim for greater fairness: Have a standard reference date (system entry date) for fair positioning of a child on a waiting list at any point in his or her care pathway;
- To develop truly integrated services: Better define the service offering, service pathways, operational practices and models for partnership between service programs;
- To optimize resources: Examine the usefulness of grouping and pooling the resources of the two disability service programs (physical disability program and intellectual disability and autism spectrum disorder program).
Ombudsperson Raymonde Saint-Germain believes that “at a key stage in the development of children with disabilities, continuous access to services is a pressing matter. The Québec Ombudsman’s recommendations are realistic and are aimed at this critical goal. Reform of the health and social services network is the right context for implementing the recommendations. Above and beyond administrative merging of institutions, the primary concern must be genuine service integration for these children’s benefit.” The Ministère de la Santé et des Services sociaux accepted the recommendations.
To be consulted
Carole-Anne Huot, 418-646-7143/418-925-7994