Aging Well for Adults with Intellectual/ Developmental Disabilities

1. Aging Well for Adults with Intellectual/Developmental Disabilities 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

2. Framing Pathways in Aging Well for Adults with I/DD • What’s Aging Well • Current Knowledge • Key Issues • Health • Family Support • Future Planning • Technology and Environment

3. 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.

4. Key Issues • Adapting to age-related changes in health • Providing family support to aging caregivers • Using person-centered approaches in planning for the future • Using technology and modifying environment

5. 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.

6. Sociological/Demographic Shifts • Emphasis on community living • More exposure to “health risks” than segregated living environment. • Respect on “making choices” and “taking risks” • Ability to make educated decisions. • Increased longevity • More risk of age-related chronic and secondary conditions. • Greater interest in health promotion

7. Adapting to Age-related Changes in Health

8. Earlier Aging for Syndrome Specific: Down syndrome • 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

9. Earlier Aging for Syndrome Specific: Fragile X and Prader-Willi • Fragile X • Heart problems (mitral valve prolapse) • Musculoskeletal disorder • Earlier menopause • Epilepsy • Visual impairment • Prader-Willi: • Obesity related outcomes: cardiovascular disease and diabetes • Psychosis and behavioral changes

10. Earlier Aging for Syndrome Specific : Williams Syndrome • Memory loss • Gait problems • Multiple organ systems

11. Earlier Aging: Associated Developmental Disabilities • Cerebral palsy • Reduced mobility, fractures • Decreased muscle tone and increased pain • Difficulty eating or swallowing • Less clear speech • Bowel and bladder problems • Osteoporosis

12. Earlier Aging: Associated Developmental Disabilities • Epilepsy • Osteoporosis and fractures due to medication • Remission or worsening of seizures • Autism • Mental health aspects (depression) • Long-term medications effects • Severe intellectual disability and nonambulatory • Greater risk of respiratory infections • Earlier age-related declines

13. International Research on Obesity Prevalence in Adults with I/DD

14. International Research on Obesity Prevalence in Persons with I/DD Simila and Niskanen (1991) Males without ID Finland Stewart et al. (1994) Males with ID Australia Females without ID Australia Moore et al. (2004) Females with ID Norway Hove (2004) [Melville et al. Obesity Rev. 2007;8:223-230]

15. Risk Factors for Injuries and Falls among Adults with I/DD • Hsieh, Heller, Miller (JIDR, 2001;45:76-82) • N=268 adults with ID > 30 yrs. (75% resided in nursing homes) • 30 participants (11%) had an injury in the previous 12 mos., of which 50% were caused by falls. • Risk Factors for falls: • > 70 yrs of age • Ambulatory • Seizures

16. Prevalence of Fractures in Women with Intellectual Disabilities 93 chart reviews of women with ID Results: • 30/93 (32%) had a history of adult-onset risk fracture at a mean age of 41.7 yrs. Significant association with: • Increasing age • Post-menopausal • Taking anticonvulsant medications (Schrager et al., JIDR 2007;51:253-259)

17. Access to Health Care • Less likely to get health screenings • Pap smear and Mammograms • Women less likely to do breast self exams • Prostrate and testicular cancer • Dental • Vision and hearing • Fewer immunizations • Influenza • Less likely to receive palliative care

18. Access to Health Care • Under-diagnosis • Mental health (anti-psychotics without diagnosis*) • Mobility • Sensory • Arthritis • Diabetes • Hypertension *Lewis et al, (2002)

19. Comorbidity (epilepsy, hypothyroidism, obesity) Psychiatric conditions Medications Endocrine abnormalities Lack of menstruation (Amenorrhea) Early menopause (Down syndrome and fragile X) Health Risks Related to Gender: Women’s Issues

20. Women’s Issues: Sexual Health • Lack of appropriate information • Developmental changes • Safe sexual practices • Motor problems in contraceptive use • Difficulties in communicating with partners • Limitations on opportunity for sexual activity • Increased vulnerability to sexual abuse • Reduced fertility (amenorrhea, hysterectomy, and sterilization)

21. 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

22. Fitness and ID • Adults with ID have greater decline in fitness over 13 years • DS worse fitness than others with ID • Exercise results in greatest improvements in those with lowest fitness • Muscular strength related to cardiovascular conditioning in people with DS

23. Nutrition Our knowledge of disability and nutrition is next to nothing! • 93% adults with I/DD living in the community have a high fat diet. • 63% of adults do not consume enough fruits and vegetables. • Potato/corn chips: 56% 1-3 times per week, 10% 7 times per week Draheim, et al. (2002), Hsieh & Yamaki (2009)

25. Health Promotion Curriculums (6) • Exercise and Nutrition Health Education Curriculum for Adults with DD • University of Illinois at Chicago, Dept. of Disability and Human Development • Healthy Athletes • Special Olympics • Healthy Lifestyles Workshop for People with Disabilities • Oregon Health and Sciences University (OHSU) • Living Well with a Disability • Research and Training Center on Disability in Rural Communities • Steps to Your Health Program • University of S.C., School of Medicine • S.C. Dept of Disabilities & Special Needs • Women Be Healthy • N.C. Office on Disability and Health

27. Model Health Promotion Program:UIC Center for Health Promotion • Intervention Protocol: One hour for each session, 3 x per week, for 12 weeks • Center-based vs community-based Fitness Intervention • Nutrition Class • Health Behavior Education Class • Health Behavior Education Class for Caregivers

28. Fitness Classes

29. UIC Health Promotion Curriculum

30. BLAST Health and Wellness Program • 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 Project Blast T-Shirt

31. www.ncpad.org

32. 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

33. 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

34. 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.

35. 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

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

37. 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

38. Exercise Video Sample

39. Accessible programs in your area 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.

41. Providing Family Support to Aging Caregivers

42. Family Caregiver Support Program • Congress created the National Family Caregiver Support Program as part of the Older Americans Act Amendments of 2000. • Family caregivers of older adults aged 60 or older. • 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)

43. Using Person-centered Approaches in Planning for the Future

44. The Future is Now The Future is Now The five sessions included the following topics: • Taking the First Step to Planning • Relationships and Support Networks • Residential and Housing • Work, Retirement, and Leisure • Identification of a Future Caregiver or Key Succession Person The 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.

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

46. “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.”

47. Using Technology and Modifying Environment

48. 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 Disabilities • Way finding/Directional Signage • Simplicity of Public Information • Environmental Cues

49. Environmental Barriers & Supports: Physical Access • 4 main areas to evaluate • Entry in/out, including emergency exits • Stairs/level changes • Bathroom access • Mobility & access throughout space (doorways, hallways, handles, equipment access)

50. 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