Joint Position Statement of AAIDD and The Arc
All young children who are at-risk for or who have been identified with intellectual and developmental disabilities (IDD)* should have access to high-quality, affordable developmental services in natural environments. These services should build on the strengths of the child and family, address their needs, be responsive to their culture and personal priorities, and be delivered through research-based practices.
Access to and quality of intensive intervention for children with developmental delays and disabilities remains inadequate, despite a validated knowledge-base that establishes its critical importance. Early intervention services are inconsistent at the state and local level. Often such services are neither appropriate, nor well-timed, nor sufficient in intensity and quality to promote positive development or to prevent secondary conditions. Many children at risk for developmental disabilities due to environmental and/or biological factors are not identified in a timely fashion. Major barriers include inadequate funding and service systems which do not accommodate the needs of families.
Early childhood services must be strengthened at the national, state, and local level. Screening and early identification must be readily available in the community and widely publicized through awareness campaigns and local child-find initiatives. Early childhood services should enhance the overall well-being and development of children who have or are “at risk” for developmental disabilities. Early childhood services should also provide family support that:
- Responds to families’ strengths and needs;
- Is delivered in a family-centered way;
- Improves family quality of life; and
- Assists family members in carrying out appropriate therapeutic practices in the home.
Children with, or at risk for, developmental disabilities must be identified and served as early as possible. Clear evidence has established that:
- Earlier is typically better when providing early childhood services and supports; and
- Providing services to children who are at-risk for developmental delay is a sound developmental and fiscal investment.
Measurable, cost-effective, and sound intervention will advance the development of children and support their health, well-being, and community participation. Substantial research and successful experience have established that early childhood services should:
- Be delivered in natural settings and, to the maximum extent possible, with same-aged peers who do not have disabilities; and
- Maximize opportunities for children to experience family, school, and community participation.
Families are the constant in children’s lives, and the primary source of lifelong support and early learning. Families should be supported in making informed decisions and in partnering effectively with professionals to achieve positive outcomes. Research and practical experience have established that:
- Families must have full access to the best available research, family wisdom and professional expertise to enable them to make informed decisions;
- Family partnerships with professionals which are based on mutual respect and trust are effective and contribute to family quality of life outcomes; and
- Children who are either in foster care or adoptive homes must be particularly targeted for screening for at-risk issues.
Children and families must have access to a system of evidence-based services which is:
- Community-based and coordinated;
- Responsive to individual and cultural differences;
- Provided by supportive and skilled personnel;
- Directed towards:
- seamless transitions between early intervention and public education;
- measurable benefits for children and their families.
Research and successful practical experience have established that:
- When early childhood services are provided in natural environments, both children and families will experience increased community inclusion during early childhood and across the life span;
- State-of-the-art service coordination will enhance the access of children and families to support and services from multiple agencies and community resources; and
- Ongoing monitoring and evaluation of services will ensure measurable outcomes, equity and effectiveness.
The Arc of the United States and the American Association on Intellectual and Developmental Disabilities supports universal access to high quality, research-based, family-centered early childhood services for all children, between birth and five years at risk for development.
Board of Directors, AAIDD
August 18, 2008
Board of Directors, The Arc of the United States
August 4, 2008
Congress of Delegates, The Arc of the United States
November 8, 2008
Reviewed and extended without revision, 2013
Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).
Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act,”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.
The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.