kelly hsieh, ph.d. rehabilitation research & training center on aging with developmental...

Kelly Hsieh, Ph.D.

Rehabilitation Research & Training Center on Aging with Developmental Disabilities (RRTCADD)

Department of Disability and Human Development

University of Illinois at Chicago

Website: http://www.rrtcadd.org

June 29, 2009

Framing Pathways in Aging Well for Adults with I/DD

What’s Aging Well Current KnowledgeKey IssuesoHealthoFamily SupportoFuture PlanningoTechnology and Environment

Aging Well Means

Living on your own terms;Adding value to society, family or friends;Maintaining health and cognitive function,

maximizing mobility, retaining function, and reducing the impact of chronic disease/ dysfunction.

Key Issues

Adapting to age-related changes in healthProviding family support to aging caregiversUsing person-centered approaches in

planning for the futureUsing technology and modifying environment

Current Knowledge

Health disparities exist in some areas (i.e., falls/fractures, obesity) and possibly not in other areas (i.e., certain preventive health services).

Living arrangement has an impact on health.

Growing number of health promotion curriculums targeting persons with I/DD.

Sociological/Demographic ShiftsEmphasis on community living

o More exposure to “health risks” than segregated living environment.

Respect on “making choices” and “taking risks”o Ability to make educated decisions.

Increased longevityo More risk of age-related chronic and secondary

conditions.

Greater interest in health promotion

Adapting to Age-related Changes in Health

Earlier Aging for Syndrome Specific: Down syndromeAdults with Down syndrome

oAlzheimer disease 15-20 years earlieroEarlier menopause (age 47 versus 52)oEarlier sensory, adaptive behaviors, &

cognitive lossesoAs age greater risk for joint problems.

seizures, tumors and heart diseaseoLess hypertension

Earlier Aging for Syndrome Specific: Fragile X and Prader-WilliFragile X

o Heart problems (mitral valve prolapse)o Musculoskeletal disordero Earlier menopauseo Epilepsyo Visual impairment

Prader-Willi:o Obesity related outcomes: cardiovascular disease and

diabeteso Psychosis and behavioral changes

Earlier Aging for Syndrome Specific : Williams Syndrome

oMemory lossoGait problemsoMultiple organ systems

Earlier Aging: Associated Developmental Disabilities

Cerebral palsyoReduced mobility, fracturesoDecreased muscle tone and increased painoDifficulty eating or swallowingo Less clear speechoBowel and bladder problemsoOsteoporosis

Earlier Aging: Associated Developmental DisabilitiesEpilepsyoOsteoporosis and fractures due to

medicationoRemission or worsening of seizures

AutismoMental health aspects (depression)oLong-term medications effects

Severe intellectual disability and nonambulatoryoGreater risk of respiratory infectionsoEarlier age-related declines

International Research on Obesity Prevalence in Adults with I/DD

21%

36%

34%

16%

8%

25%

23%

32%

24%

44%

0% 10% 20% 30% 40% 50%

Germany

Australia

Ireland

England

United States Adultswithout ID

Adults withID

International Research on Obesity Prevalence in Persons with I/DD

0% 10% 20% 30% 40%

Simila and Niskanen (1991)

Stewart et al. (1994)

Moore et al. (2004)

Hove (2004)

Finland

Australia

Australia

Norway

Males with ID

Males without ID

Females without

ID

Females with ID

[Melville et al. Obesity Rev. 2007;8:223-230]

Risk Factors for Injuries and Falls among Adults with I/DDHsieh, Heller, Miller (JIDR, 2001;45:76-82)

oN=268 adults with ID > 30 yrs. (75% resided in nursing homes)

o30 participants (11%) had an injury in the previous 12 mos., of which 50% were caused by falls.

oRisk Factors for falls:> 70 yrs of ageAmbulatorySeizures

Prevalence of Fractures in Women with Intellectual Disabilities

93 chart reviews of women with IDResults:30/93 (32%) had a history of adult-onset risk fracture

at a mean age of 41.7 yrs.Significant association with:

Increasing agePost-menopausalTaking anticonvulsant medications

(Schrager et al., JIDR 2007;51:253-259)

Access to Health Care

Less likely to get health screeningsoPap smear and MammogramsoWomen less likely to do breast self examsoProstrate and testicular cancer oDental oVision and hearing

Fewer immunizationso Influenza

Less likely to receive palliative care

Access to Health Care

Under-diagnosisoMental health (anti-psychotics without

diagnosis*)oMobilityoSensoryoArthritisoDiabetesoHypertension*Lewis et al, (2002)

Health Risks Related to Gender: Women’s Issues

Comorbidity (epilepsy, hypothyroidism, obesity)

Psychiatric conditionsMedicationsEndocrine abnormalities

Lack of menstruation (Amenorrhea)

Early menopause (Down syndrome and fragile X)

Lack of appropriate information

Developmental changesSafe sexual practicesMotor problems in contraceptive useDifficulties in communicating with partners

Limitations on opportunity for sexual activity

Increased vulnerability to sexual abuse

Reduced fertility (amenorrhea, hysterectomy, and sterilization)

Women’s Issues: Sexual Health

Mental Health

Depression and psychosis are more prelevant.People with intellectual disabilities may develop

mental health problems, although there is debate as to whether they are more vulnerable or not than the general population (Hatton 2002).

Several studies have indicated a large proportion of underdetected mental health problems in people with ID.

A low utilization of mental health services --untreated, become chronic

Fitness and ID

Adults with ID have greater decline in fitness over 13 years

DS worse fitness than others with IDExercise results in greatest improvements

in those with lowest fitnessMuscular strength related to

cardiovascular conditioning in people with DS

Nutrition

Our knowledge of disability and nutrition is next to nothing!

o 93% adults with I/DD

living in the community

have a high fat diet.o 63% of adults do not consume

enough fruits and vegetables.o Potato/corn chips: 56% 1-3 times per week, 10% 7

times per week

Draheim, et al. (2002), Hsieh & Yamaki (2009)

Table Selected developmental disabilities: Frequently reported nutrition problems and factors contributing to high nutrional riska

Syndrome or disability

Altered growth, underweight, obesity

Altered energy need

Altered nutrient needs, nutrient deficient

Constipation/ diarrhea

Feeding problems

Drug- nutrient interactions

Others

Cerebral palsy Orthopedic problems

Epilepsy Gum hypertrophy

Muscular dystrophy

Myeolomeningocele

Down syndrome Gum disease

Prader-Willi syndrome

Intellectual disability of unknown etiology

Pica

Health Promotion Curriculums (6)

Exercise and Nutrition Health Education Curriculum for Adults with DD o University of Illinois at Chicago, Dept. of Disability and Human

DevelopmentHealthy Athletes

o Special OlympicsHealthy Lifestyles Workshop for People with

Disabilities o Oregon Health and Sciences University (OHSU)

Living Well with a Disabilityo Research and Training Center on Disability in Rural Communities

Steps to Your Health Program o University of S.C., School of Medicineo S.C. Dept of Disabilities & Special Needs

Women Be Healthyo N.C. Office on Disability and Health

Areas of Health Promotion in 6 Curriculums/Programs Reviewed

26%

27%8%

8%

8%

23%

Physical Activity

Nutrition

Dental

Vision

Hearing

Psychosocial

Model Health Promotion Program:UIC Center for Health Promotion Intervention Protocol: One hour for each

session, 3 x per week, for 12 weeksoCenter-based vs community-based

Fitness InterventionoNutrition ClassoHealth Behavior Education ClassoHealth Behavior Education Class for

Caregivers

Fitness Classes

UIC Health Promotion Curriculum

BLAST Health and Wellness Program

Project Blast T-Shirt

Health and Wellness Classes at Local YMCA

Initiated by our advocate advisor who chose health and wellness as his personal Partners Project. He was interested in doing this because of his own personal wellness needs, along with being a reviewer for the UIC Exercise and Nutrition Health Education Curriculum

Became a partnership that included the Hamilton County Board MRDD (by providing seed money to pilot the program’s first two sessions and staff support), W.J. Williams YMCA

www.ncpad.org

Introduction of NCPAD’s 14-Week Program to a Healthier You

• February 2009– over 700 individuals with

disabilities, including group facilitators from various organizations, enrolled.

• NCPAD’s 14-Week Program to a Healthier You

Program Toolkit

• Toolkit Contents- Email Blast with Video Link- Downloadable tip sheet- Downloadable activity, nutrition, and goals logs

• For Group Facilitators- Posters & Handouts- Free Gift from NCPAD webshop

Web- and Email-Based Physical Activity and Nutrition Program

During 14-week program, participants have exclusive access to our physical activity and nutrition experts who provide personalized guidance.

Exercise Tips

• Exercise Bands• Strengthening Exercises with

Common Household Items• Warming-Up• Simple (Daily) Tips for

Increasing Physical Activity• At Home Exercises• *Seated Stretching• Balance Exercises• Using a Pedometer• Core Strengthening• Circuit Training

Video Filming

• Each week, video tips are filmed in house and edited by NCPAD’s Videographer and Video Editor, Barry Burman

Video Production

Area

Nutrition

• Heart Healthy Tips for Dining Out

• *Serving and Portion Sizes• Mindful Eating • Five-A-Day • Reading Food Labels • Breakfast on the Go • Creative Recipes

Substitutions• Fast-Food Feasting• Creative Ways to Cut 100

Calories• Snacking• Nutrition and Blood Pressure• Eating Well for Healthy Bones • Video Cooking Demonstration

Video Cooking Demonstration

Exercise Video Sample

Accessible Programs in your area…

• Along with HHS guidelines, handouts had a personalized listing of accessible programs in their area.

• NCPAD’s contact information was also listed for those who needed additional materials or support.

Accessible programs in your area

Providing Family Support to Aging Caregivers

Family Caregiver Support Program

Congress created the National Family Caregiver Support Program as part of the Older Americans Act Amendments of 2000. o Family caregivers of older adults aged 60 or older.o Grandparents and relative caregivers, age 55 or older, of children

18 years of age or under (including grandparents who are sole caregivers of grandchildren and those individuals who are affected by mental retardation or who have developmental disabilities). 

Illinois Home-Based Support Service Program (Caldwell & Heller, 2007)

Using Person-centered Approaches in Planning for the Future

The Future is Now

The Future is Now

The five sessions included the following topics:Taking the First Step to PlanningRelationships and Support NetworksResidential and HousingWork, Retirement, and LeisureIdentification of a Future Caregiver or Key Succession PersonThe future is now: A future planning training curriculum for families and their adult relatives with developmental disabilities, (2003). Debrine, E., Caldwell, J., Factor, A., & Heller, T.

“I met with an attorney and set up a special needs trust.”

“My daughter benefited from walking through the process. She knows what

will happen if something should happen

to mom and dad and we could no

longer care for her.”

Using Technology and Modifying Environment

Issues in Environmental Accessibility for Individuals with Intellectual Disabilities

Architectural Accessibility Laws do not adequately address issues which determine whether or not an environment is accessible for individuals with Intellectual DisabilitiesoWay finding/Directional SignageoSimplicity of Public InformationoEnvironmental Cues

Environmental Barriers & Supports: Physical Access 4 main areas to evaluateoEntry in/out, including emergency exitsoStairs/level changesoBathroom accessoMobility & access throughout space

(doorways, hallways, handles, equipment access)

Public Entry ways

Pictures of inaccessible entryway, weight of door and clearance, stairways and signage for accessible entry, distance to and path of travel to accessible entries

Stairs Inside

Pictures of inside stairway issues related to access, railings, lighting, surface of flooring, activity placement, and fall issues

Bathroom Supports at Home

Pictures of bathroom features including roll under sink, roll in shower, and grab bar placement.

Bathroom Supports & Barriers

Pictures of bathroom features including roll in shower and movable grab bars, as well as issues with joint storage use.

Bathroom Supports & Barriers

Picture of bathroom with cuations on clamp on grab bars, use of soap/towel bars as grab bars, and need for accessible, offset handles, temperature controls and extended handle shower.

Using Space: Home Issues

Picture of movement through house with issues of hallway access, door access and handles, railings, and lighting.

Using Space: Home Supports

Pictures of creative use of grab bars to support participation throughout home, and strategies to address thresholds

Using Space: Home Supports

Pictures of additional support strategies including bed grab bar, lowered switches and accessible mirror/storage.

Using Space: Home Supports

Pictures of accessible supports including lift chairs and front load washer/dryers.

Community Mobility Barriers

Community Mobility Supports

Community Mobility Supports

got my pass and ready to go

Cognitive & Communication Access Barriers

Pictures of cognitive/communication strategies that are difficult for people with ID to use.

Cognitive & Communication Access in Home

Pictures of in context cognitive cues and pictures that were used.

Cognitive Access in Home

Pictures of additional cognitive in context strategies using color coding and picture based signage.

Cognitive Access in community

No pictures on menus

= not accessible

Pictures grouped with $ options= easy to access

Cognitive Access in Community

Picture based signage & easy to follow cognitive

cues

Clogged, cluttered store with no signage and no

staff to help orient

Cognitive Access in Community

“Accessible”Signage

Cognitive Information Technology Supports

Pictures of information technology that could be cognitive assists or barriers depending on access features.

Social Access Barriers & Support

Social Access Barriers & Supports

Social Access Barrier or SupportFamily/significant other/caregiver beliefs about person and their

capabilitiesStaff beliefs and perceptions about participation

o E.g., participation limited when people start to use walker, even more with wheelchair and belief that need nursing home at that time or it’s better to keep walking even if unsafe or very little distance than to transition to mobility tech.

o Information on aging in place and how to support in least restrictive environment needed

Limited use of peers as supportso Planning on how to support each other on a trip given each

other’s strengthso Use of “participation scouts” who act as access specialists and

report back to groupo Stepping back and letting people explore and figure out how to

support each other rather than staff doing for them

Out & About: Goal Met with Supports vs. Goal Unmet

“Keep going. You can do it.”

System & Policy level Barriers & Supports Influence all ParticipationPhysical access policies or lack of knowledge about or attention to

enforcing in public spacesLack of cognitive access policy in public spacesSegregation & integration policies and offeringsDD & Group home policies on participation and their implementation

o Transportation policies and implementationo Financial support and savings policieso Differences in physical access & DD accreditation guidelineso Differences among home and facility staff in how they enforce

policies and their interpretations of themo What is policy versus “this is what’s always been done”, and the

need to revise policy to promote full participationEconomic policies and barriers

Thank You!

Contact information:

Kelly Hsieh, Ph.D.

University of Illinois at Chicago

hsieh@uic.edu