• 1696 impairments of speech, special sense or intelligence disabilities
• 59 blindness or vision impairments
• 169 deafness or hearing impairments
• 192 nonparalytic orthopedic impairments
• 155 specific deformity of limbs, trunk or back

Causes of these impairments include:

• Mental, nervous system disorder
• Diseases of the respiratory system
• Diseases of the circulatory system
• Certain congenital anomalies, causes of potential morbidity
• Disease of musculoskeletal system and connective tissue

Over the past decades, overall disability, along with specific disabilities, including asthma, ADHD, learning disorders and obesity, are increasing. Studies show that there is a substantial increase in turnover in conditions. Social Security, Medicaid, Early Intervention programs and Special Education will be affected by this increase.

Definition of Chronic Conditions

• Parents reported any health conditions that limit activities or schooling or required medicine, special equipment of special health services.
• Chronic conditions were defined as lasting more than a year and grouped into three categories: asthma; other physical chronic conditions, behavior or learning problems; or obesity. Obesity defined as a body mass index greater than or equal to age and sex-specific international standards calculated to be equivalent to an adult body mass index of 30.

In 2000, eighty-one percent of the asthma cases were new; seventy-nine of other physical conditions were new and seventy-six of the obesity cases were new.

• Development: Main task of child health needs to be assessed in terms of maximizing the child’s potential. There are difficulties because the child is a moving target; there is no ‘baseline’ function to use in assessment, wide-range of ‘normal.’
• Dependency: Young children cannot speak for themselves limiting the range of respondents. There is blurring of the roles of normal childrearing and of a child with a disability and care-taking making it harder to report on what is different.
• Diversity: A larger proportion of children come from different racial and ethnic backgrounds making it more important to look at children with disabilities from diverse backgrounds, but language and culture differences create a barrier.
• Controversies: Should the domain of health be defined physically, socially, emotionally and/ or cognitively? Each domain can be operationalized in many ways; biomedical assessments, functional implications or prognosis. If many domains are used should they be added together or considered separately? Should it be precise or simple? Whose health should be measured, the child, parent or caretaker; or teacher? Are incongruent assessments summed, averaged; or do you look at discrepant versus agreeing rates? Should measurement be disease specific? Should the measurement be age specific or a continuous measurement? Should measurements include the morbidity treatment of modalities or only the morbidity of the underlying condition? Should measures include the toll and stress of the condition on parents and caregivers.

• Administers IDEA and is dedicated to improving results for infants, toddlers, children with disabilities up to age 21
• Is a component of the Office of Special Education and Rehabilitative Services (OSERS)

The research priority areas are:

• Early childhood
• Access to the General Education curriculum
• Standards-based reforms
• Secondary Transition to Adulthood
• Positive Behavioral Supports

OSEP research has had impact in the following areas:

• Early reading using scientifically based intervention implemented within a school-wide three- tiered level of service.
• The design of instructional curricula from their conception so they will be accessible to every child
• Developed innovative practices to be used in regular classrooms for students in kindergarten through third grade
• Developed better methods: to include students with disabilities in standard assessments, produce scores that can be validly used in accountability systems, and determine student benefits, such as high school diplomas.
• Supported the development and evaluation of evidence-based research, and practice, models and dissemination for children with autism.

Although youth with disabilities may have the same sexual desire as their peers, they may have difficulty negotiating life’s tasks, including proper relations with peers. Reasons for the difficulties may include: low self-esteem, unsatisfactory body image and doubts involving the ability to reproduce and to parent. Physical disabilities may add to these problems because there may be anxiety about odor from colostomies or pain from arthritis or other disabilities. For adolescent girls, especially, unattractive physical features caused by disability often pose a severe threat to self-esteem, sometimes resulting in promiscuous attempts to prove one’s femininity.

Erickson’s tasks of Adolescence

• Emancipation
• Acquisition of identity- intellectually, sexually and functionally, that is work-related
• Development of intimacy vs. isolation

Assessments to make of adolescents with disabilities

• Is the youth being allowed to make decisions about management of care and other age-appropriate matters?
• Is there a growing sense of control of his or her life and adequate emancipation from the family?
• Is she or he moody because of a failure to form his or identity separated from the family?
• Are the peer interaction at school and social functions adequate and appropriate?
• Is progress being made to establish a sexual identity?
• Is there a developmental arrest due to the chronic illness?
• Is the teenager using inappropriate or negative, maladaptive coping mechanisms to adjust to his or her disability?
• Does the youth responsibly manage his or her own medical needs?

Complications in peer relations may include:

• Lack of social skills
• Not feeling adequate to find peer friends
• Being at risk of physical abuse, sexual abuse, bullying or harassment

Youths with disabilities may try to prove their ‘normalcy’ by:

• Promiscuous behavior
• Desire to become pregnant
• Equating physical attractiveness with sexual adequacy

Realities for Youth with Disabilities

• 65% of youth with disabilities drive vs. 90% of the general population
• Youth with disabilities are three times more likely to live in a household with an income less than $15,000
• Young adults are the largest group without health insurance in the U.S.

What Youth with Disabilities say they Need for Adulthood

• Career development-develop skills for a job and how to find out about they would enjoy
• Independent living skills
• Finding and paying for medical care
• Rights under the ADA
• Protecting themselves against crime
• Only 45% had someone to talk about medical decisions.
• Only 45% had someone to talk about jobs
• 74% say that their parents are the ones talking to the school
• The majority felt uncomfortable talking to anyone about sexuality, self-esteem, risk behaviors and health promotion
• Only half had heard of transition planning

Transition is the purposeful, planned movement of adolescents and young adults with disabilities from child-centered to adult-oriented systems. Transition plans should:

• Begin at the day of diagnosis for providers and families.
• Must be individualized and developmentally appropriate.
• Must coordinate primary and specialty care to prevent secondary disabilities.
• Written by age 14 and should include skill building and funding issues
• Components of a transition plan should include school-to-work including education, jobs, funding and community support.
• Self-determination, interdependence and recreation should also be components

At a national conference youth with disabilities expressed the following expectations:

• Being valued as a human being and treated with dignity
• Inclusive opportunities for social experiences, dating, community involvement, recreation and worship
• Education and/or job development
• Increased freedom and independence
• Meaningful work at reasonable pay

Research Questions

• What are the outcome measures (short term, long term, summative and formative) that could be used to evaluate "successful" transitions for youths with physical disabilities?
• What are the most appropriate factors that predict "successful" transition to adulthood for youth with disabilities?
• What are the key elements of transitional care models that produce the best care?
• Which youth and family characteristics identify those who would benefit from a transition program or from a particular model or transitional care?
• What systems and services, health, employment leisure and or education, are crucial to maximize successful transition and self-determination for youth with physical disabilities?
• Which of these of these systems and services are or are not available in the pediatric and adult environments?
• Should the identified services and systems be linked and how?

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