DD-4. New Innovations: Enhancing the Lives of Individuals with Developmental Disabilities

1. DD-4. New Innovations: Enhancing the Lives of Individuals with Developmental Disabilities Tuesday, October 9, 2007. 8:00am – 10:00 am Presented By: Marisa Geitner, Executive Vice President, Chief Operating Officer Ruth Benjamin RNC, CDDN, CLNC Director of Health Management and Research Heritage Christian Services, East Rochester NY

2. Heritage Christian Services • Support over 1,400 children and adults with developmental disabilities in Western New York • Provide residential and day habilitation, respite, clinical supports and service coordination

3. Innovations in Care • Residential homes for seniors with disabilities • Residential “right sizing” • Telehealth • Day services for seniors and medically frail • Hospice care

4. Residential Settings for Individuals With Aging and Dementia

5. Design Elements • Consulted experts in dementia and visual impairments • Designed the home with a circular design for people who wander and supervision levels • Natural lighting • Single bedrooms

6. Sensory Garden • Facilitates independence in a safe environment • Quiet and reflective atmosphere • Sensory input from variety of colored flowers, flowing water, and scents from flowers and herbs

7. Safety Features • Therapy tub and walk-in shower • Doors with subtle alarms • Windows with stops installed- only open 6 inches

8. Modifications that can benefit the Aging Person • Color contrasts are important for visually impaired • Grab bars can be added to the walls in the bedroom • Elevated toilet seats, sometimes even a change in the color of the toilet seat is helpful

9. Team Approach • The focus changes from Res Hab to meet needs and challenges that occur with aging individuals with DD • Focus is on maintaining skills and cognitive ability • Fulfill goals and dreams as much as possible

10. Residential Rightsizing • New funding from NYS OMRDD • Enables individuals to have their own bedroom-smaller settings • Enhanced therapeutic services • Additional funding for staff education • Research component

11. Results • We want to demonstrate: • Smaller environments increase quality of life • Smaller environments & improved education improve staff retention • Blending therapies produces better individual outcomes • Increased physical activity improves overall health

12. Physical Therapy Massage Therapy Dance Therapy Enhanced Therapeutic Services

13. Blending of Traditional and Expressive Therapies • Minimizing physical deterioration that occurs with aging • Bringing the therapy to people in the most conducive environment • Keeping treatment diverse and interactive

14. Enhanced Medical Education A 40 hour curriculum

15. Medical Education • Improving the care to those with significant and complex medical needs • Improving retention by supporting staff to be as comfortable as possible serving the elderly and those with medical challenges • Understanding the complexity of aging with this population helps us to be more proactive in their care

16. DSP Credentialing Using the College of Direct Support

17. Continuing Education •  Staff Training on aging and DD =  Staff Commitment •  Participation in day conferences =  Clinical Knowledge and  Networking • Networking

18. Health Support Professionals A Heritage Christian designed position

19. Health Support Professionals • A skilled, tenured staff that receives specialized training from our nursing staff • Provides high quality, relaxed, care and charisma to individuals in acute medical needs • Where and when they work is determined by the residential and nursing leadership

20. Tele-Health Telemedicine and Telemonitoring

21. Challenges in Healthcare requiring us to consider telehealth technology: • An aging population increases the prevalence of chronic diseases • Increased longevity of medically frail persons • Severe, current and projected, shortages of health care professionals especially RN’s • Rising cost of health care • Health care disparity for underserved populations

22. Telemonitoring: Increased monitoring results in improved care Provide accurate, timely data to physician Telemedicine: Enhances medical care, provided more timely Proactive Reduce unnecessary ER visits Objectives of Tele-Health

23. A More Flexible and Blended Day Habilitation Program • Purpose: to provide Day Hab programming while meeting the medical and psychosocial needs of the aging and/or medically frail individual

24. Reasons for Flexible Day Habilitation • The aging person with DD frequently has a primary diagnosis and secondary medical concerns that exaggerate the aging process and these needs cannot always be met in the traditional Day Hab setting • As with the general population, endurance and interests change with age and these are not always addressed in traditional Day Hab settings

25. Benefits of Flexible and Blended Day Habilitation Program • Offers the ability to change the day hab activities within the residential setting as the medical concerns of the person change and/or a decline in the persons functional level is observed. • Addresses: • Increased fatigue • Pain management • Completion of necessary medical treatments

26. WHY Medically Frail Individuals Do Not Attend Traditional Day Hab • Respiratory conditions • Compromised immune systems • Increased exposure to illnesses • Intolerance to cold or hot humid weather

27. Why Individuals with Down Syndrome & Dementia Benefit from More Flexible Day Hab • Calmer and familiar environment with less stimuli • Rest periods that address sleep cycle disturbances • Less attention on detailed tasks • Slower pace

28. More Benefits… • Allows for staffing within the home while focus is still community oriented • Allows for preferred activities that are meaningful and enjoyable

29. Hospice Care in the Residential Setting

30. Purpose of Providing Hospice Care in the Residential Setting • Provides care that extends to the whole person: • Physically • Socially • Emotionally • Psychologically • Spiritually • Allows the individual to maintain control and dignity • Individual is surrounded by familiar, loving, and caring people known as family

31. Purpose of Providing Hospice Care in the Residential Setting • Planning and decision-making directly involves the individual, and all those connected to him or her • Provides for the needs of individual’s family, friends and caregivers • Everyone involved receives support, as well as gives support

32. Team Approach • The Individual • Family and extended family of Heritage Christian • Friends • Residential Nurse • Other Agency Clinicians • Staff • Primary Physician • Hospice nurse from an outside agency • Chaplains, and spiritual care providers from within the agency

33. Priorities in End of Life Care • Alleviate physical pain, and provide optimal comfort with non medication based modalities (music, massage, distraction) • Address & alleviate when possible emotional and spiritual distress • Compose individualized plan of care that eliminates all unnecessary medical intervention • A plan of care focusing on effective pain management, nutritional needs, bowel management, fatigue, skin integrity, sleep disturbances, changes in mental status, and ability to communicate • A plan of care to address the psychosocial needs and desires of the individual. This plan must include individual involvement and be based on individual’s culture, beliefs, interests, and wishes • Change plan as frequently as necessary when any aspect of plan is no longer effective

34. Points to Consider for Hospice Plan • Discontinue unnecessary medications except pain meds, bowel meds, anxiety meds • Eliminate routine VS, I & O, weights andResidential Habilitation plans • Educate and support the family, caregivers, QA, and administration as to the plan of care • Ongoing education of family & caregivers to the changes in the physical & cognitive processes as death nears

35. Your Focus is the Individual • Cultural influences- beliefs, values, respect the individual’s needs to die on his/her own terms • Family members’ beliefs also need to be considered • Assist the individual to understand what is happening when possible • Environment- respect privacy, yet convey compassion, support and presence • Meet spiritual needs • Alleviate fear and guilt

36. Your Focus is the Individual Con’t… • The environment is all about who that person is! • Visits from family and friends are important • Granting last wishes- don’t be afraid, these times are often the most meaningful and cherished not only to the person, but hold loving memories for families, friends & caregivers

37. Your Focus is the Individual Con’t • Having familiar staff provide 1:1 • Favorite foods • Favorite music • Let the person decide when to complete ADLs • Scrapbook • Individual decides which med he wants • Medicate continuously – do not wait for pain or restlessness to be present – keep sustained level of meds in blood

38. Proper use of Hospice • Utilize support systems around you- community hospice nurses, clergy etc. • Work as a team • Teach those around you • Facilitate grieving • Reach for support from others and realize importance of self care

39. Pieters Family Life Center

40. Resources • Alzheimer’s Association • Association for the Blind and Visually Impaired • Diagnostic and Treatment Centers • Networking-build your own set of experts • ANCOR and state trade associations

41. Questions?

42. Ruth Benjamin, RNC, CDDN, CLNC Director of Health Management and Research Heritage Christian Services 349 Commercial St. Ste. 2795 East Rochester, NY 14445 (585) 340-2000 rbenjamin@heritagechristianservices.org Marisa Geitner, M.S., CCC-SLP Executive Vice President and Chief Operating Officer Heritage Christian Services 349 Commercial St. Ste. 2795 East Rochester, NY 14445 (585) 340-2000 mgeitner@heritagechristianservices.org Contact info