An older couple, both with Down syndrome, smile and look at a dog the man is holding
Quality of Life Summary/in /by TheArcAdmin
The primary goal for all persons with intellectual and/or developmental disabilities1 is to enjoy and maintain a good quality of life.

QUALITY OF LIFE

People with intellectual and/or developmental disabilities must be able to lead the life they choose so that they can have a quality of life that is meaningful to them.

 

1“People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18,” as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.

An older woman with short gray hair and covered in a blanket looks at her assistive technology screen, with another woman standing beside her and also viewing the screen
Quality of Life/in /by TheArcAdmin
People with intellectual and/or developmental disabilities1 must be able to lead the life they choose so that they can have a quality of life that is meaningful to them.

ISSUE

People with intellectual and/or developmental disabilities often do not have the services, supports, and personal relationships they want and need to lead a full life in the community. They may encounter attitudinal, public policy, service system, and other barriers that keep them from choosing where they live and work. Moreover, they often lack opportunities to participate in and contribute to their communities.

POSITION

People with intellectual and/or developmental disabilities must have the opportunity to lead lives that offer them a meaningful quality of life. A meaningful quality of life exists for them when they:

  • Receive, at all stages of their lives, the support, encouragement, opportunity, and resources to explore and define how they want to live and who is in their lives;
  • Choose the services and supports they need and receive them anywhere in the country without waiting for an uncertain and extended length of time;
  • Direct the services and supports they receive;
  • Lead a life enriched by friends and family and have opportunities for intimate relationships based on informed consent and responsibilities;
  • Experience life-long learning and develop decision making skills;
  • Work in a job that is meaningful to them;
  • Enjoy the same rights and respect for their dignity and privacy, as do people without disabilities;
  • Are fully informed about options, understand the risks associated with the options, and are allowed to take risks inherent in the options they choose; and
  • Receive support to live in a healthy and safe environment.

Policies, regulations, and funding must promote these desired outcomes. In addition, public agencies, private organizations, and individuals providing services and supports must:

  • Be accountable and responsible to individuals and their families;
  • Continuously improve their efforts to support individuals;
  • Be recognized when they make major contributions to the quality of life of individuals;
  • Be replaced when they fail to defend or protect the people they serve or fail to enhance the quality of their lives;
  • Participate in ongoing monitoring that is independent of the service provider; and
  • Ensure training that will lead to desired outcomes and the satisfaction of the people served and their families.

 

Rev’d 2015
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1“People with intellectual disability and/or developmental disabilities” refers to those defined by the AAIDD classification and DSM IV. In everyday language they are frequently referred to as people with cognitive, intellectual and/or developmental disabilities although the professional and legal definitions of those terms both include others and exclude some defined by DSM IV.