Introduction

The Joint Commission is in the initial stage of refining and revising performance expectations for organizations that provide services to persons with developmental disabilities and is seeking input from the field. We are aiming to dialog with stakeholders, interested professionals, service providers, service recipients and their families through this forum. Specifically, we are asking for input on what action(s) on the part of service providers, is essential to providing safe, quality services for persons with intellectual disabilities and for those with pervasive developmental disorders, such as Autistic Disorder. Furthermore, we are focusing on the following:

1. Is there widespread use of the term "intellectual disabilities?" Is there an agreed upon definition of the term currently in use?
2. Is there widespread use of the term "pervasive developmental disorders?" Is there an agreed upon definition of the term currently in use?
3. With respect to intellectual disabilities should there be different types of assessment and treatment approaches, community integration, and person-centered focus?
4. With respect to pervasive developmental disorders should there be different types of assessment and treatment approaches, and community integration and person-centered focus?
5. What are the most important topics or issues that should be looked at to evaluate the quality and safety of an organization that serves people with intellectual and other developmental disabilities?

Goal

The goal of this topic is to obtain stakeholder input on what action(s) on the part of a service provider organization are essential to providing safe, quality services for persons with developmental disabilities. In addition, The Joint Commission would like to obtain stakeholder ideas and experience on the usefulness of establishing different expectations for services for persons with intellectual disabilities and services for persons with pervasive developmental disorders such as Autistic Disorder.

Participants should feel free to use the tools provided below to post comments, identify research that might help to inform the discussion, identify experts that The Joint Commission should contact, and draft new standards and/or performance requirements. Please note that all participants must register and Login before posting content (registration is free).

References
American Association of Intellectual and Developmental Disabilities (AAIDD):
The official AAIDD definition of intellectual disability: Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before the age of 18.

National Institute of Neurological Disorders and Stroke (NINDS):
The NINDS describes Pervasive Developmental Disorders in the following way: The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and repetitive body movements or behavior patterns. Autism (a developmental brain disorder characterized by impaired social interaction and communication skills, and a limited range of activities and interests) is the most characteristic and best studied PDD. Other types of PDD include Asperger's Syndrome, Childhood Disintegrative Disorder, and Rett's Syndrome. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.

Department of Health and Human Services, Centers for Disease Control and Prevention (CDC):
The CDC describes developmental disabilities as a diverse group of severe chronic conditions that are due to mental and/or physical impairments. People with developmental disabilities have problems with major life activities such as language, mobility, learning, self-help, and independent living. Developmental disabilities begin anytime during development up to 22 years of age and usually last throughout a person's lifetime.

The CDC describes autism spectrum disorders (ASDs) as a group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests. Many people with ASDs also have unusual ways of learning, paying attention, or reacting to different sensations. The thinking and learning abilities of people with ASDs can vary – from gifted to severely challenged. ASD begins before the age of 3 and lasts throughout a person's life. It occurs in all racial, ethnic, and socioeconomic groups and is four times more likely to occur in boys than girls.

Also See: Quality Improvement Topics Related to Behavioral Health Care:

• Recovery: Improving Quality of Life - Housing
• Recovery: Improving Quality of Life - Employment
• Implementing Failure Mode Effects Analysis in Behavioral Health Care Settings
• Using Outcome Informed Care Processes to improve BHC Outcomes

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