ADDRESSING THE CHALLENGE: EMERGING POLICY AND ETHICS AND ASSISTIVE TECHNOLOGY

1. ADDRESSING THE CHALLENGE: EMERGING POLICY AND ETHICS AND ASSISTIVE TECHNOLOGY M. Fordyce MD

2. Moira Fordyce MD, MB ChB, FRCPE, AGSFmoiraf9@gmail.com • Geriatrician • California Coalition for Caregivers • Vice-chair AGS Public Education Committee • Member CA AT Coalition • Teaching • Writing • Public Speaking • Educational TV Program M. Fordyce MD

3. 1. Policy and AT M. Fordyce MD

4. 1. Policy and AT • Lip service paid • Health Care Reform Bill • CLASS Act • Older Americans Act • Americans with Disabilities Act • Funding for AT • DME benefit • IOM recommends • A model program M. Fordyce MD

5. a) Lip Service Paid to AT • 2009 President Obama - value of home-based care • DHHS Healthy People 2020 included: • Increase the proportion of adults with disabilities who participate in social, recreational, community, and civic activities to the degree that they wish • Reduce the number of people with disabilities who report unmet need for assistive devices, service animals, technology services, and accessible technologies they need M. Fordyce MD

6. b) Health Care Reform Bill and AT(HR 3590) Patient Protection and Affordable Care ActSigned into law March 23, 2010 www.healthcareandyou.org M. Fordyce MD

7. Health Care Reform Bill and AT • Certified EHR Grant Program for LTC Facilities - $67.5 million • Demonstration Project for Use of HIT in Nursing Homes to Improve Resident Care • Development of Medicare Part D Prescription Dispensing Techniques in LTC Facilities M. Fordyce MD

8. HCRB and AT • New Models of Care Utilizing Technology • The “Community Living Assistance Services and Supports Act” - CLASS Act • Use of technology in new cost efficient payment models - Center for Medicare and Medicaid Innovation - CMI - November 2010 <innovations.cms.gov> M. Fordyce MD

9. HCRB and AT • Use of HIT in Health Homes for Enrollees with Chronic Conditions • Use of technology in new state options for LT Services and Supports M. Fordyce MD

10. Sad but True • Expansion of health care coverage does not necessarily mean access to care • So, Medicaid and Chip Payment and Access Commission (MACPAC) set up under the Affordable Care Act (ACA) to review access and payment policies • Dual eligibles and disabled children M. Fordyce MD

11. c) Community Living Assistance Services and Supports Act • CLASS Act will enable a new model of funding for long-term services and supports, including the use of aging services technologies to meet care needs M. Fordyce MD

12. CLASS Actwww.advanceclass.org • Cash benefits paid into a Life Independence Account of an eligible beneficiary shall be used to purchase non-medical services and supports that the beneficiary needs to maintain his or her independence at home or in another residential setting of their choice in the community M. Fordyce MD

13. CLASS Act Services and Supports Including (but not limited to) • Home modifications • Assistive technology • Accessible transportation • Homemaker services • Respite care • Personal assistance services • Home care aides • Nursing support M. Fordyce MD

14. CLASS Act • January 5, 2011 - Kathleen Sebelius, the DHHS Secretary announced her intent to open the doors of the Office of CLASS within the Administration on Aging (AoA). This decision is the first step in helping millions of Americans overcome barriers to independence M. Fordyce MD

15. CLASS Act • Kathy Greenlee (Assistant Secretary of Aging) made administrator of this program • February 7, 2011 Secretary Kathleen Sebelius reinforced the Administration's commitment to moving forward with the implementation of the CLASS Act. M. Fordyce MD

16. d) Older Americans Act Funds programs and services to keep older adults independent including: • Meals On Wheels • Home and community-based care • Senior centers • Family caregiver support • Prevention of elder abuse • Older worker training and employment M. Fordyce MD

17. Older Americans Act • Transportation • Long-term care ombudsman program • Legal services • Services for Native Americans and Native Hawaiians • Research and training M. Fordyce MD

18. e) Americans with Disabilities Act • Defines a disability as a condition which limits a person’s ability to function in major life activities – including communication, walking, and self-care (such as feeding and dressing oneself) – and which is likely to continue indefinitely, resulting in the need for supportive services. M. Fordyce MD

19. Need for AT As population ages, need for AT increases, but - • Economy in a mess • Major cuts in all areas - feds and state • Number in poverty increasing • Much talk, little action so far M. Fordyce MD

20. f) Funding for AT • Medicare - under DME benefit • Medicaid - under DME benefit • Department of Veteran’s Affairs • Not-for-profit organizations • Private organizations • Community resources • Grants • Self-funding M. Fordyce MD

21. Funding for AT • Unpredictable • Effect on developers? • Could uncertainty about payment inhibit new developments? M. Fordyce MD

22. g) Durable Medical Equipment Benefit • Definition of DME obsolete • Needs to change • Narrow focus on restorative care only • Focus needs to shift to: • Preventing loss of function • Preventing illness and injury • Maintaining independence • Staying in community • Working at gainful employment M. Fordyce MD

23. DMEwww.durablemedicalequipment.org • Review and redefine “medical necessity”, perhaps re-name? • Educate health professionals • Educate lay people M. Fordyce MD

24. h) Institute of Medicine Recommends: • A comprehensive disability monitoring system should be created to help monitor disability and inform policymakers. There should be more public funding for disability research programs. • The Department of Justice should increase efforts to enhance the Americans with Disabilities Act, which will require health insurers to cover assistive technologies and devices. M. Fordyce MD

25. IOM Recommends:www.iom.edu • Congress and administrative agencies should eliminate long waiting periods for disability insurance. • Consumers and professionals alike should be better educated about the proper care for people with disabilities and about they challenges they face. M. Fordyce MD

26. Low Tech in Action! M. Fordyce MD

27. i) A Model Program The Department of Veterans’ Affairs (DVA): • Purchases more assistive devices for individuals with disabilities than most other agencies • It has a systematized structure to pay for its large volume of equipment M. Fordyce MD

28. DVA • It provides widespread education for consumers and clinical personnel • It also invests in R and D, evaluation, development of standards, and development of procurement guidelines for assistive devices. M. Fordyce MD

29. DVA • The DVA program covers traditional medical equipment such as artificial limbs and wheelchairs, as well as products that don’t fall under the heading of medical necessity, such as automobile and home modifications. M. Fordyce MD

30. Bottom Line - Policy • Much talk • Little action • Keep pressure on legislators to, for example, implement the CLASS Act, build on the DVA program M. Fordyce MD

31. 2. Ethics and AT M. Fordyce MD

32. ETHICS AND AT • Four principles • Monitoring • Tested and True? • Needs and Resources • Possible Problems • New Hammer • Effects on Whole Society? M. Fordyce MD

33. a) Four Principles • Non-maleficence simply means - Do no harm. Are we in danger of doing more harm than good? • Beneficence means striving consciously to be of benefit to the person M. Fordyce MD

34. Four Principles • Autonomy refers to respecting the person’s rights to things like self determination, privacy, freedom, and choice • Justice means treating everyone fairly. For example providing equal access to technology, or taking into account diversity and individual differences. M. Fordyce MD

35. 1984 - Big Brother! M. Fordyce MD

36. b) Monitoring in Different Settings • At home • On computer • Place of work • Other buildings • In automobile • In nursing home • In hospital • ANYWHERE! M. Fordyce MD

37. Monitoring in Different Settings • What data will be collected? • Medical? • For safety? • Financial? • Other? For marketing? • Why is it being collected? • Are there “more protected” data? M. Fordyce MD

38. Monitoring in Different Settings • Where is data stored? • If data archived, how long will it stay there? • Does it follow you around? • Can any information be deleted? • Can any information be changed? • If so by whom? M. Fordyce MD

39. Monitoring in Different Settings • Who has access to it? • How is access controlled? • How easy is it to hack in? • What scams could arise from covert monitoring? M. Fordyce MD

40. Monitoring in Different Settings • Can an individual’s data be combined with others for prediction models? • Can you be monitored against your will, without your consent? • What happens to privacy and freedom? M. Fordyce MD

41. c) Tested and True? • Is it ethical to market and use technology that has not yet been proven to be of benefit? • Who will evaluate it? • How to evaluate it? • How reliable and safe is the AT? • Can it be easily fixed/serviced? M. Fordyce MD

42. d) Needs and Resources • Resources are scarce and getting scarcer: • Who gets help/funding to have AT? • Who decides this? • How is the decision made? • More need than resources M. Fordyce MD

43. M. Fordyce MD

44. Ethical AT Usee) Possible Problems • Learned helplessness? • Loss of function? • Loss of human contact/interaction? • AT used to cut back on this? • Does AT help or hinder relationships? M. Fordyce MD

45. Possible Problems • Does AT improve quality of life? • Does AT focus on person’s problems instead of strengths? • Are there other options that would be as good as or even better than AT? M. Fordyce MD

46. Possible Problems • Some older adults do not want to advertise the fact that they need help, so avoid AT • What scams could arise from AT marketing claims? M. Fordyce MD

47. f) New HammerNails Everywhere? • What are the attitudes of health professionals to AT? • What are the attitudes of engineers and other researchers to AT? • Risk/benefit analysis essential: • To do or not to do? M. Fordyce MD

48. New Hammer - Nails Everywhere? • AT can be good and bad at same time: • Monitoring for safety invading privacy • Should take a long term view rather than quick fix • Love small gains! • Is need episodic or progressive? M. Fordyce MD

49. g) Effects of AT on our whole society? M. Fordyce MD

50. AT and Society • Aging boomers and AT • All of us affected, if we’re lucky! • Depersonalization? • Isaac Azimov • Three Laws of Robotics M. Fordyce MD