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