Rutgers, The State University of New Jersey Liberty Plaza, 335 George Street, New Brunswick, NJ 08901

rwjms.rutgers.edu/boggscenter p. 732-235-9300 f. 732-235-9330

Tamar Heller, PhD

Distinguished Professor and Head Department of Disability and Human Development

University of Illinois Chicago Chicago, IL

Challenges and Opportunities in Serving Adults Aging with Intellectual and

Developmental Disabilities

May 15, 2020

The attached handouts are provided as part of The Boggs Center’s continuing education and dissemination activities. Please note that these items are reprinted by permission from the author. If you desire to reproduce them, please obtain permission from the originator.

5/14/2020

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Challenges and Opportunities in Serving Adults Aging with Intellectual and

Developmental Disabilities Tamar Heller, PhD

Distinguished Professor and HeadDepartment of Disability and Human Development

University of Illinois at Chicago, Chicago, IL

May 15, 2020

http://rwjms.rutgers.edu/boggscenter

Deborah M. Spitalnik, PhD

Executive Director, The Boggs CenterDirector, NJLEND

http://rwjms.rutgers.edu/boggscenter/links/COVID-19Resources.html• COVID-19 National & State Resources• Plain Language Information• Healthcare & Communication Resources• Resources in Support of Physical & Emotional Well-Being and Mental Health• Boggs Center Resources about Grief and Loss• Boggs Center Resources about Supported Employment • Resources about Face Masks

COVID-19 Resources on The Boggs Center WebsiteGoToWebinar Control Panel

Handouts

• Handouts may be downloaded from the Control Panel.

• The webinar recording and handouts will also be posted on The Boggs Center web site next week: http://rwjms.rutgers.edu/boggscenter/dd_lecture/audio.html

Questions

• We are planning to have a brief Question and Answer session at the end of the lecture.

• In order to ask a question, you have to type it in the Questions section of the Control Panel.

Certificates of Attendance for Continuing Education Recognition

To receive a Certificate of Attendance, you must:

Be logged onto the webinar from start to finish and

Complete the evaluation at the end of the webinar

Certificates will be emailed to attendees who meet these requirements next week

Challenges and Opportunities in Serving Adults Aging with Intellectual and

Developmental Disabilities Tamar Heller, PhD

Distinguished Professor and HeadDepartment of Disability and Human Development

University of Illinois at Chicago, Chicago, IL

May 15, 2020

http://rwjms.rutgers.edu/boggscenter

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Tamar Heller, PhD

Distinguished Professor and HeadDepartment of Disability and Human Development

University of Illinois at ChicagoChicago, IL

Tamar Heller, PhDBoggs Center on Developmental Disabilities

Rutgers Robert Wood Johnson Medical SchoolMay 15, 2020

Department of Disability and Human Development  University of Illinois at Chicago

theller@uic.edu

Specialized aging corner of segregated centersSenior services as “age appropriate”Person‐Centered Planning for later lifeBeing part of communityHuman rights (United Nations, 2006)Medicaid Home and Community‐Based Services Final Rule (2014)

Aging without a disability?Ableism 

Staying youthful?Ageism  

“Compulsory youthfulness” (Gibbons, 2016)Intersectionality with disability studiesOld disabled as “failures”, diminished worthDepends on ones choice and effort  (Rowe & Kahn, 1998)What is the state’s responsibility?

Explore how people with ID view agingAdopt empowered frameworks 

Disability identityInterdependence versus independence

Take into account role of minority status, poverty, cultureTake a life course approach

Living on your own termsAdding value to society, family or friendsMaintaining health and function

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Life expectancy similar unless they havesevere levels of cognitive impairmentDown syndromecerebral palsymultiple disabilities

It means that you are settled and know what you are doing. I am more kinder, I get along a lot better. I have friends I am happy with and that I do things with. For the future I wish that I keep going happy and that I don’t feel old and that I am not in a  wheelchair.

I feel people 50 years and older have the same chances as younger people have – and more! Especially people with disabilities. Finally, I feel older people with disabilities shouldn’t let their age or disability stop them from getting the job of their dreams or having fun. 

Development of chronic health conditions 

Changes in family caregiving and supports 

Retiring from employment 

Receiving end of life care 

Poorer health and earlier age related conditions

DementiaOsteoporosisOral healthDiabetes

Higher rate of falls

More obesitySedentary behaviorUnhealthy dietsRelated to health related quality of life

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Diagnosis of cancer at a later stagePolypharmacyDeaths amenable to health care interventionLack of testing/treatment for COVID 19

Difficulty communicating symptomsUnderstanding prevention instructionsRationingPrevention of support person at hospitalsNeed to know the rights to equal access and support

Worse outcomes with age over 65Worse outcomes for those with chronic conditions 

Heart, lung, diabetes, obesity More cases in long‐term care settings

Strategies to Reduce Disparities

Greater knowledge about impairment and treatments

Reduction in poverty and unhealthy environments

Improved health behaviors through health literacy and health promotion 

Improved access, accessibility, equity, and effectiveness of health care

Better health and fitness in later life

Health Matters: Exercise, Nutrition and Health Education Curriculum for People with DD  (Heller et al., 2004; Marks, Sisirak, & Heller, 2010)Living Well with  a Disability  (RTC: Rural, University of Montana)We Walk (Hsieh, 2019)

Other HealthMattersTMPrograms

Health Messages: Peer training

Getting the Memo: Creating a culture of health promotion

Signs and Symptoms: Observe changes in health conditions

www.HealthMattersProgram.org

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HealthMattersTM Program InterventionExercise, Nutrition and Health Education     Curriculum

Train‐the‐Trainer                            Creating a Sustainable                      Health Promotion     Program                                                 

Marks B, Sisirak J, Heller T. Health Matters: The exercise, nutrition and health education curriculum for people with developmental disabilities. Baltimore: Brookes, 2010.

Marks B, Sisirak J, Heller T. Health Matters: Health Matters for People with Developmental Disabilities: Creating a Sustainable Health Promotion Programs. Baltimore: Brookes, 2010.

www.HealthMattersProgram.org

Fitness ClassesHealth Education Classes

1 hour of health education class three days a week

36 interactive classes 

Personal notebook/tape

https://www.youtube.com/watch?v=Dyuk09cUCYo

Exercise and Nutrition Health Education Curriculum  Aims

understand attitudes toward health, exercise and food

find exercises that they like to do and set goals

gain skills/ knowledge about exercising and eating  well

support each other during the course of the class

identify places in their community to exercise

Curriculum Emphasizes self‐determination and choice versus social control

responsibility

individual involvement in planning and meeting exercise goals

changes in health behaviors in five stages

support from caregivers

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(Heller, Hsieh, Rimmer 2004; Rimmer, Heller, Wang, Valerio, 2004)

knowledge about exercise confidence in ability

to exercise 

life satisfaction physical activity, strength & energy, Peak VO2, & stair climbing

caregiver perceptionof exercise benefits

Access barriers

Exercise and Nutrition Health Education for Adults with DD: Train‐the‐Trainer Curriculum

Provide staff with the skills, knowledge, and abilities to… – Implement a physical activity  (PA)and health education program

– Teach ways to increase PA and healthy food 

– Support to maintain long‐term lifestyle changes.

(Marks, Sisirak, & Chang, 2013; Pett, et al., 2013)

Improved energy and less painImproved psychological well‐beingPositive exercise/nutrition expectationsEnvironmental supports for nutritionKnowledge of fruit and vegetable intake recommendations Organizational policies that support health promotion  for direct care workers

Adults age 30 and over (n=52)Participated in 12 week , 3 days per week exercise and health education programCompared to controls showed:

Less painIncreased self‐efficacyIncreased social environmental support

1 hour of physical activity 3 days/week

Emphasis on flexibility, cardiovascular endurance, muscle strength, balance

Follow guidelines for frequency, intensity, stretching 

Use the equipment and exercise safely

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Get an OK from a health care providerIncorporate PA throughout dayTailor made for personExercise a minimum of 3 days/30 minutes (moderate intensity)More benefits if more rigorous (moderate to vigorous for 60 minutes)Make it progressiveKeep it fun and rewardingFoster fitness among staff and caregivers

How many participants/clients in the program?What is the number of staff available?How much time?How many sessions per week?What is the size of the space?What kind of assistance do our clients use?What resources and equipment do we have available?Do we have staff that are doing and/or are interested in specific physical activity?

Staff/family members can support:  .• Give encouragement  to stick with it• Offer to exercise together• Plan for exercise on recreational outings• Discuss ways to get more exercise• Ensure transportation• Identify ways of paying• Show how to exercise

Caregiver Support for Exercise

Staff/family can influence choice/control                      in meal  preparation and  access to  food  Support can be provided:• Encourage healthy food choices• Assist in developing plans and goals for changing eating habits

• Remind people to avoid high fat, salty foods and to eat more fruits and vegetables

• Compliment people on changing eating habits • Offer fruits and vegetables as a snack 

Caregiver Support for Nutrition

• Supportive environment and                           attitudes within  your                                   organization

• Policies supporting health and safety• Supportive attitudes among staff and   

management for healthy lifestyles for                adults with I/DD and themselves

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Work with a local /state entityConduct Request for ProposalsConduct webinar trainings with certified instructorsDevelop wellness committeesConduct HM Assessments and evaluationImplement programDevelop sustainability plan

CBO Interest and Commitment1. HealthMatters Assessments

• 146 Service providers in Kentucky in 20142. Getting the Memo Webinar

• 270 Service providers participated 3. HealthMatters, Kentucky: 

Scale‐Up Research Project• CBOs completing letter of commitment• HealthMattersWebinar Workshops  to teach staff 

to start a HealthMatters Program 

Copyright ©2014 HealthMattersProgram.org

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Train‐the‐trainers program to                         teach adults with IDD to become               coaches along with staff mentorsFocused on teaching participants                         to increase their weekly PA and to                  drink more water75 minute webinar, toolkit/coaching manualPaired with mentor in learning content and developing leadership skills 

Deliver 12 sessions with about 10 peopleBooklets and  2 wristbands displaying the weekly health messages 

One  to keepOne to pass on the message to another

Can share health messagesPeople are about the same ageCommon interestsBenefits the coaches as well

34 staff and 67 adults with IDD aged 30  plusRandomized intervention results:Coaches increased  PA and hydration knowledgeMentors increased confidence to teach program Program participants

increased PA  and hydration knowledgeincreased social support for engaging in PAImproved PA and hydration

Need to include health promotion in CBO mission, vision and job descriptions

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“We Walk,” a technology intervention to improve the PA of adults with ID and their family caregivers.Use of technology intervention in promoting PA in adults with ID and their family caregivers

A single group pre‐post designDriven by  social cognitive and self‐efficacy theories (Bandura, 1986; Bandura, 1997)A 12‐week walking program with wearable PA trackers(i.e., Fitbit Charge HR) and texting messages interventionIncrease in moderate and vigorous physical activity

We Walk

Recruited from LHIDS online

cohort(23 pairs)

Fitbit Training

Baseline Assessment

7‐day Fitbit data Proxy survey

12‐week intervention

FitbitTexting messages

Monthly phone interviews 

Post‐intervention(21 pairs)

Rationing of health care for older and disabled?Organ transplantsDialysis

Key criteriaYears of life expectancyAbility to keep regimenAmount of support available

Will these interventions improve quality of life balanced with burden for person and carers?

Health checks and preventive screeningRisk versus benefitsEquality of access

Patient centered care and health literacyNeed for health literacy educationTime for listeningCarer involvement

Generic versus specialized servicesCase of woman in generic nursing home

Getting needs met through access to quality services. 

“I was able to receive a good psychiatrist, one that has been really helpful to me, and I was able to get my glasses.”

Humanizing treatment by healthcare professionals 

“The doctors have been listening and they find the better solution.” 

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Skilled, knowledgeable, and experienced  providers

“My doctors tells me to take my pills every day and sees how I am doing.”

Accessible communication  “My doctors take care of me good, I understand when they talk to me.” 

Doctors who did not demonstrate respect for them “I am unhappy with my doctor…if he’s the only one there, I won’t go…I know that’s bad for my health but…he is very rude and makes me feel stupid…I know my body and I know if something is wrong with me…he thinks he’s better and smarter than I am and we bump heads.”

Delays in getting services“I needed a personal assistant and it took a long time, had to have family members help and they didn’t always know what to do.”

Lower healthcare appraisal  Having worse health statusLiving in institutional settings Having more unmet transportation needs

More unmet healthcare needs Having worse health statusBeing a racial/ethnic minorityAlso having a physical disability

Greater family involvementinput in healthcare decisionsfamily support needs met

Better care coordinationknowledgeable care coordinatorsrespectful of ones wishes and input

Journey to Better HealthcareMy Health Passport: Important in pandemic

Documentary on health care and IDDVoice to advocates to share their storiesExamples of how changes can be made on all levels of a healthcare organization to better treat these patients.Produced by Rush University Medical Center and Georgetown University Center for Excellence in Developmental Disabilities. https://vimeo.com/415331167

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More likely to live with parentsOften need LTSS life‐longFamilies and persons with disabilities need to engage in future planning

Fewer opportunities for employmentRestricted social networkImpact on physical and mental health and stress for some groupsGreater difficulties as parents  and person with IDD ageCaring also has its positive aspects

Only 15% of families caring for person with IDD  received public family support (Braddock et al., 2017)

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“I wish my child dies 4 minutes before I do”Four Bodies in Elmhurst

Why would an 82‐year‐old man kill hisson, his daughter, his wife and himself?Photo by Jeff Himmelman, Dec. 2, 2015 / New York Times

Experts say probation understandable for  woman who killed disabled daughter 

Liltz pleaded guilty to involuntary manslaughter in the death of her daughter. Photo by Stacey Wescott / Chicago TribuneBonnie Liltz and her attorney. 

Over 5500 siblings and supporters27 state chaptersStarted in 2007Resources, research, advocacy

www.siblingleadership.org

Charting the Life Course(www.lifecourse.com)

Family Support Research and Training Center Promising Practices

Caring for the CaregiverFuture is Now

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Future is Now  (Heller & Caldwell,  2006)PLAN (Etmanski) CanadaUse of social media to support                    families (Hoosier TYZE Project)The Arc Center on Future Planning www.futureplanning.thearc.org/

Background:Research showing need & input from stakeholdersExperience with different interventions

Purpose:Develop future planning goals Develop letter of intentIncrease advocacy for supports

Caregivers experience less burden, including less worry about futurePersons with IDD have greater voice in decisions about their life

Taking the First Step : Identifying Dreams and NightmaresBuilding Relationships and Support NetworksDesired Living Arrangements Post‐Secondary Education, Work, and Retirement OpportunitiesIdentifying Key Succession Person

Learning takes place over time Families learn from each other and support each other to take risks.Homework assignments completed jointly by families and their relative with a disabilityBreaks the process down into manageable steps

Pre‐session on legal/financial planning

Facilitators guide for families

Workbook for families

Facilitators guide for people with disabilities

Workbook for people with disabilities

Integration of person‐centered and             family‐centered philosophiesPeer supportInclusion of Peer TrainersProblem solving around family dynamics and family valuesFocus includes both current and potential community supports

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Includes essential information about the individual with a disability’s strengths, preferences, interests, support needs, and health. Identifies goals:

to expand friendships and supports; make future living arrangements; arrange for postsecondary education, work, or retirement; and designate a successor caregiver.

Family Support Research and Training Center (FSRTC) and The Arc’s Center for Future Planning

https://futureplanning.thearc.org/https://fsrtc.ahslabs.uic.edu/

Piloted  two types of future planning  interventions for professionals working with adults with IDD and families 

Conducted with agencies in eight US states. Evaluated participants’ outcomes and outreach initiated by the trained professionals

Under‐recognition of health issuesNeed for palliative care trainingGreater barriers to hospice careUnderstanding of death and losses (disenfranchised grief)Training needs of staff

Teaching concepts of deathCausesEnd of life functionsAll dieCan’t return to life

Understanding griefEmotional responsesBehaviors

MourningDeath happenedFeel painGet used to lossesBegin to do new things

Turning to others for comfortRituals (account for religion and culture)

FuneralsVisitation

Allowed in 5 U.S. states 51% U.S. pro‐assisted suicide

Equating disability with poor “quality of life”Concern about “burden” on familyTerry Schiavo case

not terminalwithdrawal of food                                                    and water

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AGING as a field has a lot to contribute to the DISABILITY and vice versaMany common needsEfficiency in services

Historical segmentation of service systemsDifferent philosophies, terms, and definitionsDistinct fields of knowledge and practice, limited sharing or exchange Protection and duplication of fundsMissed opportunities for knowledge translation, innovative policy change, and co‐funding

Exchange of researchAdaptation of interventionsDevelopment of policy embracing ideas from both fields

Geriatric Assessments (Hahn)Falls Prevention Programs (Otago Program)Chronic Disease Self‐Management

Diabetes adaptations for DD (Centers for Excellence in Aging and Community Wellness, University of Albany)

Family CaregivingFamily Support Research and Training Center (UIC)Caring for the Caregiver (Kennedy Center and SE Connecticut Agency on Aging)

Aging in Place, Aging in Community, Disability and Aging Friendly Communities 

Few (16%) in integrated employment (2015 National Core Indicators) and in full time employment (13%) (American Community Survey, 2015)Mostly (43%)in facility based and non‐work setting (Winsor et al., 2017) including retirement options, such as volunteering, recreational and health promotion activities, senior center participation, and continuing education  (Sulweski et al., 2017). Some states no longer funding facility based

Transition to Retirement

Attending community group or volunteeringUse of MentorsPlanning meetingTraining of mentorsChoice of activities and mentorsOngoing support

Stancliffe, Bigby, Balandin, Wilson (2013)

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Understanding Aging and Life Stages: Life StoryRights & Choice MakingExercise I and II Healthy EatingStress ReductionWhere We LiveFriendships & Community SupportsWork, Volunteering, & Free TimeReview & Goal Setting

Administration for Community LivingAging and Disability Resource CentersNational Respite ActNational Family Caregiving Support ProgramNational Alzheimer's Project ActChronic Disease Self Management

National Plan to Address Alzheimer’s Disease (NAPA)National Task Group on ID and Dementia Practices (NTG)

www.aadmd.org/NTGNTG projects funded (ACL)

FL, ME, RI, HI

3 day workshops on dementia in 17 states with 1300 support workers with 500 staff using curriculumCo‐sponsor 1018 NDSS Adult Down Syndrome Summit for family caregivers of older adults with DSOn‐line support group for familiesNTG caregiver newsletterCaregiver’s guide for families in Rhode Island

Planful cooperation can help institute proactive and helpful screenings, interventions, and programmatic supports, and cooperative cross‐cutting research  Models  to cooperatively deliver services and increase the public benefit Given growth of the aging population,  ‘special’ populations call for special attention and collaborative planning

Greater use of technology and universal design to address age related changesTransportation assistancePressure on system and families with lack of work force and community capacityGrowing recognition of supportive decision‐making and interdependenceNeed for research on better ways to bridge aging and IDD

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Funded by National Institute on Disability, Independent Living and Rehabilitation Research, Administration on Community Living, grant # 90RT5012-01-03 to the University of Illinois at Chicago.

Tamar Hellertheller@uic.edu

Q & A

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Notes

Notes

Cover HellerBW 6 slides per page FINAL Heller DDLS 5-15-20 combinednotes pages