JENNIFER JONES, PH.D. HUMAN DEVELOPMENT & FAMILY SCIENCE OKLAHOMA STATE UNIVERSITY Developmental Disabilities

Terminology Developmental Disability Intellectual Disability (replaced Mental Retardation) Developmental Delay Special Needs

Developmental Disability (DD) Mental or physical impairment or combination Disability manifested before age 21 and likely to continue indefinitely Requires services that are life-long, individualized, and interdisciplinary Limitations in at least 3 of following areas Self-care Language Learning Mobility Self-Direction Independent Living Economic Self-Sufficiency

Intellectual Disability (ID)  Originates before the age of 18  Characterized by significant limitations in both:  intellectual functioning (reasoning, learning, problem solving)  adaptive behavior, which covers a range of everyday social and practical skills

Is intellectual disability the same as developmental disability? Not exactly. Developmental disability is an umbrella term that includes intellectual disability but also includes some physical disabilities. For example, some developmental disabilities can be strictly physical such as blindness from birth. Some individuals have both physical and intellectual disabilities stemming from genetic or other physical causes (e.g., Down syndrome, fetal alcohol syndrome). Sometimes intellectual disabilities can stem from nonphysical causes, such as the level of child stimulation and adult responsiveness. (Source: Common practice in both research and with service providers is to use the term intellectual and/or developmental disability (IDD).

Changing from MR (mental retardation) to ID (intellectual disability) Includes the same population (i.e., change in name did not impact eligibility for services) Maintains the three essential elements of MR for the past 50+ years:  Limitation in intellectual functioning  Behavioral limitations in adapting to environmental demands  Early age of onset

Extending Dignity and Respect The “R” word  Person First Language  spdf/pfl9.pdf spdf/pfl9.pdf

What about “developmental delay”  Used to describe young children (usually under the age of 8) who exhibit significant delays in their developmental age compared to their chronological age.  Broad, umbrella term that may include young children with disabling conditions such as Autism, Down syndrome, or Speech and Language delays.  Term used to describe the population of children who receive early intervention services from SoonerStart.  Educational category used for IEPs of most children receiving special education services ages 3 to 8.

What about “special needs” Older term that was used primarily in lay circles to describe children with intellectual and/or developmental disabilities Lacks specificity  Difficult to know what population one is referring to Some feel that “special” invokes pity Not used in research or professional organizations; however, it does continue to be used by lay groups (e.g., churches, product manufacturers and marketing) As professionals, we should use the most specific and appropriate terminology (i.e., developmental delay, developmental disability, intellectual disability)

BEST Term Intellectual and/or Developmental Disability (IDD) American Association on Intellectual and Developmental Disabilities (AAIDD)

Factors that Cause or Contribute to IDD Genetic  May be inherited (e.g., Fragile X syndrome)  Chromosomal (e.g., Down syndrome) Environmental  Teratogens (e.g., alcohol, lead, mercury)  Perinatal Anomalies (anoxia, prematurity)

PREVENTION of IDDs Some IDDs that are caused by environmental factors can be prevented or the risk can be significantly reduced.  Fetal Alcohol Spectrum Disorders  Spina Bifida  Cerebral palsy

INTERVENTION Resources What resources are available?  SoonerStart  DDSD: Developmental Disabilities Services Division  Special Olympics Oklahoma  TARC  Parent support groups: disability specific

Early Intervention Services To qualify for SoonerStart services in Oklahoma a child must be between the ages of birth to 36 months and: 1) exhibit a delay of 50% in one or 25% in two or more of the following developmental domains: adaptive, cognitive, communication, physical, or social-emotional development, OR 2) have a diagnosed physical or mental condition that has a high probability of resulting in a delay.

INTERVENTION: helping parents What do parents need?  Early Years  Early Adolescence  Coping Strategies and Social Support

Potential Stressors for Families of Young Children (Guralnick, 2005)  Information Needs  Interpersonal and Family Distress  Resource Needs  Confidence Threats

Potential Stressors Continued Information needs  child’s diagnosis  effective intervention programs  specialized child care providers  guidance on day-to-day interactions Interpersonal and family distress  re-evaluate family goals and routines  adaption of goals and routines may cause distress that is isolating or debilitating.

Potential Stressors Continued Resource needs  Financial strain  Accommodating changes in work and recreational activities  Child’s therapeutic intervention schedule (PT, OT, Speech) Confidence threats  Stressors may culminate in a crisis of confidence for parents.  In other words, navigating the information and resource needs while adapting to new family goals and routines may feel overwhelming and leave some parents feeling ill prepared to parent a child with disabilities.  Likewise, the complexity of care that a child with disabilities requires may leave one or both parents feeling unsure of their parenting role.

Challenges for Families as Child Ages Middle Childhood and Adolescence  Child and Parent seeking opportunities for autonomy and identity formation  Parents charged with encouraging independence while mindful of the need to protect  Children beginning to “age-out” of services

Coping Strategies and Social Support Coping strategies and social supports needed to enhance the family’s capacities  Effective coping strategies  Available social supports  Creating inclusive environments within Extension

Take-Away Messages Terminology matters “Different not less” Factors that cause & contribute to IDD Prevention Intervention  Available resources  Meeting parents needs  Creating an inclusive environment