Health Promotion

Exercise and Nutrition HealthEducation for Adults withDevelopmental DisabilitiesTamar Heller, Ph.D.Rehabilitation Research and Training Center onAging with Developmental DisabilitiesDepartment of Disability and Human DevelopmentUniversity of Illinois at ChicagoHarrisburg, PA, April, 20041640 West Roosevelt Road, Chicago, IL 60608-6904;800-996-8845 (voice); 800-526-0844 (TTY);e-mail: rrtcamr@uic.edu; fax: 312-996-6942;website: www.uic.edu/orgs/rrtcamr/

Aging Well Means:• Living on your own terms;• Adding value to society, family or friends;• Maintaining health and cognitive function,maximizing mobility, retaining function, andreducing the impact of chronicdisease/dysfunction.

Health Promotion• Health Promotion is the science and art ofhelping people change their lifestyle to movetoward a state of optimal health (O’Donnell,1989).

National Center for Health StatisticsA large proportion of persons who are in badhealth end up with a disability, and alarge proportion of persons who are disabledend up with bad health.

Issues in Disability and HealthPromotion• People with disabilities (PWD) are often viewed bythe health care establishment as a medicalcommodity and are treated as “patients” rather than“participants.”• Physicians are not sure what to recommend inhealth promotion.• PWD are often perceived as having more pressingissues than health promotion.• PWD often do not qualify for existing programsbecause of the many barriers to participation.

Magnitude of Disability in theU.S.• People with disabilities account for only 17% of thenon-institutionalized population in the U.S. butconstitute 47% of total medical expenditures.• There is evidence indicating that secondaryconditions are at least one underlying cause forthese increased health problems and associatedexpenditures.• Health promotion participation by people withdisabilities could have a substantial impact onimproving health and reducing medical costs.

Disability and HealthPromotion• Most health experts agree that terms such aswellness and health promotion are often notassociated with persons with disabilities.• Empirical studies on health promotion forPWD are almost nonexistent• Disability is usually an exclusion criteria in mostresearch.• Emphasis on disability prevention is stillentrenched in our health care system.

Paradigm Shift in Health Care• Away from Disability Preventionand• Toward Prevention of SecondaryConditions

Defining Health• Old definition from WHO:• Health is defined as the absence of disease.• Ottawa Charter Definition of HealthPromotion:• “The process of enabling people to increasecontrol over, and to improve, their health.”• Important component:– Empowerment/self-determination

Health Promotion andDisability: Research• Absence of data (HP 2010 goals for PWDwere based largely on a few small studies oranecdotal information).• HP 2000 Panel: “A clear opportunity exists forhealth promotion and disease preventionefforts to improve the health prospects andfunctional independence of people withdisabilities.”

Common Trends in HealthPromotion for People withDisabilities• Consumer movement: greater awareness ofdisability• Broadening of legal rights• Broadening interest on the part of human serviceprofessionals (e.g., OT, PT, nutrition, kinesiology)• Disability Studies: new field in higher education• Health promotion is an integral part of disability studies

What is Empowerment?• Having a measure of control over one’s life, of beingable to choose what one wants to do or be, and ofbeing able to develop one’s talents.• Many people with disabilities lack empowerment:• Cannot find employment.• Access to good health care may be confounded by lack ofknowledge and understanding by health care providers.• Lack finances to engage in recreation and social activities.• Society’s stigma concerning disability “dis-empowers”people with disabilities (I.e., inaccessible transportation,recreation, etc.)

What Constitutes Sound HealthPromotion Practices for Peoplewith Disabilities?• Must believe that there is an equitable systemthat is readily accessible.• Must learn what they are entitled to and mustbe given the “tools” of health promotionspecific to their disability.• Must change the “disease care” model to a“health promotion” model.

Life ExpectancyDifferences:DevelopmentalDisabilities• Life expectancy for persons with I/DD is similar tothat of the general population unless they have• severe levels of cognitive impairment• Down syndrome• cerebral palsy• multiple disabilities

Age of DeathA ge in years80070.4N.Y. StatePopulation66.1D D w ith o u tD o w nsyndrom e55.8D o w nsyndrom e• Average age of death inNew York state’s generalpopulation was 70.4.• Average age of deathwithout Down syndromewas 66.1 years.• Average age of death withDown syndrome was 55.8years.(Janicki et al. 1999; NY StateDepartment of Health 1992)

Projected Change in Percentage ofPeople with DevelopmentalDisabilities from Year 1990 to 2030120100806040200% ChangeTotal DDpop*Age 55-64**Age65+*** Based on a 1.7% prevalence rate** Based on a 1.4% prevalence rate

Health Risks• Specific syndromes• Associated developmental disabilities• Placement within specific day andresidential programs• Access to health care services• Lifestyle and environmental issues• Health promotion/disease preventionpractices

Earlier Aging for SomeGroups: Syndrome Specific• Adults with Down syndrome• Alzheimer disease 15-20 years earlier• Earlier menopause (age 47 versus 52)• Earlier sensory, adaptive behaviors, &cognitive losses• As age greater risk for joint problems.seizures, tumors and heart disease• Less hypertension• Visual impairment

Earlier Aging for SomeGroups: Syndrome Specific• Fragile X• Heart problems (mitral valve prolapse)• Musculoskeletal disorder• Earlier menopause• Epilepsy• Visual impairment• Prader-Willi: high rates of cardiovascular diseaseand diabetes

Earlier Aging: AssociatedDevelopmental Disabilities• Adults with cerebral palsy• Reduced mobility, bone demineralization,fractures• Decreased muscle tone and increased pain• Difficulty eating or swallowing• Less clear speech• Bowel and bladder problems• Respiratory disease (leading cause of death)

Earlier Aging: AssociatedDevelopmental Disabilities• Adults with epilepsy• osteoporosis and fractures due to medication• remission or worsening of seizures• More severe mental retardation andnonambulatory• Greater risk of respiratory infections• Generally earlier age-related declines

Older Age-RelatedConditions• Obesity• Dental disease• Gastroesophagealreflux and esophagitis• Constipation• Bowel obstruction andgastrointestinal cancer• Sensory impariments• Non-atheroscleroticheart disease• Mobility impairment• Thyroid disease• Osteoporosis• drug polypharmacy• deaths due topneumonia

Interconnected Components of aHealthPromotion ProgramExerciseNutritionHealthBehavior

Core Domains of Health PromotionFitness and Physical Activity• Physical activity levels among persons withdisabilities is strikingly low.• cardiovascular endurance• strength• flexibility• balance• pulmonary function• General physical activity (e.g., wheelchair pushups,stretching for persons with cerebral palsy)

Core Domains of Health PromotionNutrition• Our knowledge of disability and nutrition is next tonothing!• Medication interactions used for disability and for otherhealth-related conditions (e.g., hypertension)• Altered metabolic processes (e.g., rate of metabolism maybe slower or faster for certain conditions)• Varied modes of eating (e.g., soft diet)• RDA for vitamins and minerals unclear for certaindisabilities• Protein intake may need to be increased for certainconditions (e.g., muscular dystrophy, post-polio).

Core Domains of Health PromotionHealth Behavior• Stress management• Smoking cessation• Proper medication usage• Good sleep habits• Good hygiene• Empowerment/self determination• Spirituality• Accessing good medical care

Model Health Promotion Program:UIC Center for Health Promotion• Intervention Protocol: One hour for eachsession, 3 x per week, for 12 weeks• Center-Based Fitness Intervention• Nutrition Class• Health Behavior Education Class• Health Behavior Education Class forCaregivers

Curriculum OverviewBased on Transtheoretical Model of BehaviorChange and Social Learning ModelPhase 1 Understanding Health and Exercise—Making Choices About My HealthPhase 2 Considering Lifestyle Changes—Assessing My BehaviorsPhase 3 Making Lifestyle Changes—Setting GoalsPhase 4 Lifestyle Changes—Doing My ProgramPhase 5 Lifestyle Changes—Staying with MyProgram

Fitness Classes

Health Education Classes• 1 hour of healtheducation class threedays a week• classes are based ona curriculum that has36 interactivesessions designed forindividuals with I/DD

Exercise and Nutrition Health EducationCurriculum for Adults withDevelopmental Disabilities• understand attitudestoward health, exercise andfood• find exercises that they liketo do and set goals• gain skills and knowledgeabout exercising and eatingnutritious foods• support each other during the course of the class• identify places in their community where they canexercise regularly

Curriculum Emphasizes• self-determination• choice• responsibility• individual involvement in planning andmeeting exercise goals• changes in health behaviors in five stages

Stages of Change1. Precontemplation: no intention to change2. Contemplation: intention to change within6 months3. Preparation: making plans to change within 30days4. Action: behavior changed for 6 months5. Maintenance: behavior changed for morethan 6 months

Health, Exercise, & NutritionMaking ChoicesPhase 1Classes focus on increasingparticipant’s understandingof health and exercise, alongwith making decisions aboutone's health.

Changing My LifestyleAssessing My BehaviorsPhase 2Participants considerlifestyle change andassess their exercise andnutrition behaviors.

Making Lifestyle ChangesSetting GoalsPhase 3Classes focus on settinggoals and examiningbarriers and influences thatmay affect one’s ability toexercise or eat a morenutritious diet.People are ready to takeaction and change aspecific behavior.

Lifestyle ChangesDoing My ProgramPhase 4Classes focus on reinforcingnew behaviors to keep theirexercise and nutrition goals.Participants are exercisingand trying to includehealthy foods in their diets.

Lifestyle ChangesStaying With My ProgramPhase 5Classes focus onreviewing whatparticipant’s have learnedand different ways tocontinue with theirprogram. People areconsidering ways toprevent relapse.

Program Outcomes⇑ knowledge & exercise perception⇑ life satisfaction & exercise self-efficacy⇑ confidence in abilityto exercise⇑ physical activity⇑ caregiver perceptionof exercise benefits⇓ barriers to exercise facilitiesand equipment

Program Outcomes• key barriers to exercise: cost, being tired or bored by theexercise, problems using equipment• over 2/3 reported receiving little supportfor exercising• over 50% lacked confidence toperform exercise• increased exercise knowledge &perceived benefits of exercise• improved strength & energy,Peak VO2,, & stair climbing

Exercise and Nutrition HealthEducation for Adults with DD: Trainthe Trainer Program• Direct Support Staff Training• 6-8 Hours of Train-the-Trainer classes• Goals• Provide staff with skills, knowledge, and abilities to:• 1) Implement a physical activity and healtheducation program for adults with DD• 2) Teach adults with DD ways to increase physicalactivity and healthy food choices• 3) Support adults with DD to incorporate physicalactivity and healthy lifestyles into daily activities

Trainer-thethe-Trainer ProgramObjectives• Review key concepts on teaching andmonitoring exercise (e.g., heart rate, bloodpressure, maintaining equipment, and safety)• Learn how agency culture and staff knowledge,attitudes, and beliefs affect adults with DD (e.g.,perception of exercise and healthy foods)• Evaluate and track health status and behaviorsduring the exercise classes (e.g., pain, sweating,drinking, breathing, nutrition, medications,illness, and sleep)

Trainer-thethe-Trainer ProgramObjectives (2)• Set realistic goals for participants with DD• Encourage participants to make lifestyle changes(e.g., increase physical activity and make healthyfood choices)• Support participants to maintain long-term healthylifestyles

Future Needs• Community based programs where peoplework and live• Use of train-the-trainer approachesincluding use of web-based training• More attention on underservedpopulations such as persons with DD• more federal dollars to support HPprograms