Health Area of Emphasis
Within the Health Area of Emphasis the Waisman Center works to promote the overall health and wellness of individuals with developmental and related disabilities. Following the World Health Organization definition, health is the state of physical, mental and social well-being. Optimal health is a goal for everyone, regardless of ability or disability. Healthy individuals contribute to assuring healthy families and healthy communities. And when individuals are healthy, they can more successfully participate in and contribute to the various streams of community life.
With the health area, the UCEDD provides diagnostic and follow-along clinical services, sponsors disciplinary and interdisciplinary preservice training and continuing education, and conducts research and evaluation focused on selected topics.
Societal attitudes and assumptions about disability and individuals with disabilities significantly impact how health and wellness is promoted in our communities and in the lives of all individuals. Recalling the historical paradigm, disability was equated with defective and in need of fixing. As a result, institutional barriers were created that precluded persons with disabilities from participating fully in society's mainstream. (Silverstein, 2000). Disability is now viewed as a natural and normal part of life. As a result, society's approach towards people with disabilities is shifting - moving away from a focus on preventing disability to a focus on responsibility to "promote the health and improve the quality of life of persons who already experience a disability" (Drum, 2009).
Health Disparities. Health disparities means differences in the incidence, prevalence, mortality, burden of diseases and other adverse health conditions or outcomes that exist between population groups. Available data indicates that health disparities between people with and without disabilities are as pervasive similar to those recognized between ethnic minority groups. Examples of special areas of concern are access to care, oral health, physical activity, and mental health.
Life Course Models to Promote Health. There is increasing interest among federal and state agencies in utilizing Life Course Health Development (Halfon, 2002) as a model to understand the development of disease and the promotion of health. Within this model, health is viewed as developmental process that occurs throughout the lifespan and builds on both longitudinal connections across the lifespan as well as developmental periods within various life stages. As the UCEDD continues to study and address health and disability, the LCHD model will be an important reference.
Training of Personnel. Many health care organizations, clinics and community support programs include staff that has made a commitment to serve individuals with disabilities. However, such individuals are the exception rather than the norm in the overall health care workforce. Therefore greater attention must be given to designing and strengthening preservice and continuing education programs to assure practitioners and administrators learn about individuals and family needs and evidence based practices related to serving those with disabilities.
Health-Related Activities at the Waisman Center
In order to address the health area of emphasis, the Waisman Center is currently involved in the following activities.
Direct Service to Individuals and Families
Clinical Services to Individuals and Families: Within the following specialty clinics, diagnostic and assessment services are provided to persons who have, or are suspected of having developmental delays or disabilities
- Child Development/Developmental Disabilities
- Cerebral Palsy
- Biochemical Genetics
- Communication Aids and Systems
- Spasticity and Movement Disorders
- Early Autism and Communications
- NICU Follow Up
Information and Assistance. Within the Waisman Resource Center, free and confidential information and assistance is provided to individuals, families and health care providers about health related resources and supports.
Community Nursing. Functioning within the service area of Dane County, this program provides health assessment, planning and intervention around issues of health maintenance and care when ill to individuals with developmental disabilities.
MCH LEND provides interdisciplinary and disciplinary leadership training for graduate students and community professionals to improve systems of care that promote the prevention of disabilities and assure access to services for children with neurodevelopmental and related disabilities and their families.
Health Related Disciplinary Training experiences are arranged through academic programs, such as field experiences or pediatric specialty rotations through affiliations with the American Family Children's Hospital or occasionally on an individual basis. Interdisciplinary clinical training can be completed as part of the MCH LEND. Pediatric Residents and Family Medicine Residents also complete rotations in the Waisman Center clinics.
Community Training and Technical Assistance
Medical Home is a statewide training and technical assistance initiative to encourage and support the recommendation of the American Academy of Pediatrics and the Title V Children with Special Health Care Needs Program that health care to children and youth with special health care needs is provided in accord with the concepts and principles of the Medical Home. A medical home addresses how a primary health care professional works in partnership with the family/patient to assure that all of the medical and non-medical needs of the patient are met. A medical home is defined as primary care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective.
Developmental Screening is a multi-faceted statewide training and technical assistance initiative to encourage and support the recommendation of the American Academy of Pediatrics to conduct routine developmental screening at ages 9-, 18-, and 30-months. Screening does not give a diagnosis, but identifies areas in which a child's development differs from same-age norms. Concerning screening results indicate the need for further assessment to determine a child's strengths and needs.
Newborn Hearing Screening. Working within the leadership of the Wisconsin Division of Public Health, the Sound Beginnings promotes screening of all infants for hearing loss prior to discharge from the hospital following birth. The program monitors the status of hearing testing in the state, and an electronic surveillance program called We-Trac has been developed to assure timely follow up testing for those babies that fail hearing testing.
Transition and Adult Health Care includes a framework and corresponding series of publications to assist young people with special health care needs and their parents to prepare for the transition to adult health care.
Community Trainings are routinely presented for individuals with disabilities and support providers. Topics include: OSHA and universal precautions, adult CPR and first aid, safe medication administration, addressing mealtime issues in the home and workplace, skin care and make-up, and hair: ship-shape and stylish.
Research and Evaluation
Autism and Other DD Surveillance is a multiple-source investigation to determine and monitor the number of eight year-old children in the population with an autism spectrum disorder (ASD), mental retardation, and/or cerebral palsy.
Health Disparities and Developmental Disabilities. Modeled after efforts with the Office of the Surgeon General in 2002, this Waisman Center facilitated initiative works in cooperation with the Wisconsin Department of Health Services, the Wisconsin Board for People with Developmental Disabilities, Disability Rights-Wisconsin and Arc Wisconsin. To date an action plan to address health disparities of individuals with a developmental disability has been developed, followed by regional meetings to discuss and apply selected action steps.
Other examples of Waisman Center based research in the health area of emphasis:
- Life course impacts of disability on the family, Marsha Mailick, PhD
- Role of family relationships in development of resilience in high risk infants, toddlers, & preschoolers, Julie Poehlmann, PhD
- Ability of humans to function in their environment using sound, Ruth Litovsky, PhD
- Cultural variation in experience of care giving for persons with DD and mental illness, Sandra Magana, PhD.
- National Children's Study, Maureen Durkin, PhD
Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation: Report of the Surgeon General's Conference on Health Disparities and Mental Retardation. Rockville, MD:. U.S.Dept. of Health and Human Services, Public Health Service, Office of the Surgeon General: Washington DC. Surgeon General's Conference on Health Disparities and Mental Retardation. Washington DC. (2001)
Drum, CE, Krahn, GL, Bersani, H, Disability and Public Health, APHA Press, Washington D.C. (2009)
Halfon, N., Hochstein, M., Life Course Health Development: An Integrated Framework for Developing Health, Policy, and Research, The Milbank Quarterly, Vol.80, No.3, (2002)
Silverstein, Robert and the Center for the Study and Advancement of Disability Policy, Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy, 85 Iowa L.REV.1691, (2000)