Bridging the Aging and Developmental Disabilities Service ... - rrtcadd

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TABLE OF CONTENTS Executive Summary .......................................................................................................... 5 Introduction ....................................................................................................................... 9 Needs of Adults with Developmental Disabilities and Their Families ....................... 11 Description of Service Networks .................................................................................... 14 History of Bridging Aging and Developmental Disabilities ........................................ 19 Federal Health and Long-Term Supports and Services Reform................................ 24 The Bridging Role of Aging and Disability Resource Centers ................................... 30 Summary of Key Issues .................................................................................................. 40 Recommendations for Bridging the Aging and Developmental Disability Networks ........................................................................................................................................... 44 References ........................................................................................................................ 48 Appendix 1: Acronym Definitions ................................................................................. 52 Appendix 2: ADD Envisioning Session Testimonies on Aging ................................... 55 Appendix 3: Memorandum of Understanding Between AoA and ADD .................... 63 Appendix 4: ADD Aging Training Initiative Projects ................................................. 70 Appendix 5: AoA Aging and Developmental Disabilities Discretionary Grants ...... 73 Appendix 6: Executive Summary of National Task Group on Intellectual Disabilities and Dementia Practices Report ............................................................ 92 Appendix 7: State Profiles of ADRCs Serving People with Developmental Disabilities ................................................................................................................... 97 Appendix 8: Examples of UCEDD and ADRC Collaborations ............................... 102 Appendix 9: Information Sources ............................................................................... 104 iv
Executive Summary Background People with developmental disabilities are aging at unprecedented rates and have unique health and service needs. Adults with developmental disabilities have a higher risk of developing chronic health conditions at younger ages than other adults, due to the confluence of biological factors related to syndromes and associated disabilities. They also may face poor access to adequate health care, as well as lifestyle and environmental issues. These unique service needs of this population pose new challenges for existing service networks. Traditionally the aging and developmental disabilities services systems have run on parallel tracks. Large-scale legislative changes that target long-term care services and supports will require greater communication and coordination between the two systems. In this time of great transformation, it is critical for the two systems to work together as their populations face similar needs including managed long-term, integrated care for people who are dually eligible for Medicaid and Medicare, and rebalancing initiatives that promote community living. Purpose and Objectives By assessing key issues this population faces, and the extent to which they are being addressed, this project identifies policy and service delivery issues pertaining to adults aging with developmental disabilities and their families. This initiative includes discussion of the differential and shared philosophies and values underpinning the aging and developmental disability networks. It also provides information for the Administration on Developmental Disabilities (ADD) and other federal agencies on being catalysts for promoting progressive policies across aging and disability populations. And finally this report recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks. Policy Initiatives This report discusses recent major policy developments that pertain to the service needs of people with developmental disabilities and their families. Widespread efforts to bridge the aging and developmental disabilities (DD) service systems began in the 1980s in response to the large numbers of adults with developmental disabilities who were surviving into old age, including many who were still living with their parents. States also began to establish managed care plans for health care and long term supports for people with developmental disabilities and other Medicaid beneficiaries to contain escalating program costs. More recently, passage of the Lifespan Respite Care Act (P.L. 109-442) and National Alzheimer’s Project Act (NAPA, P.L. 111-375) have provided the opportunity for grantees to further involve and incorporate people with developmental disabilities into their services and supports. Additionally, several provisions of the Patient Protection and Affordable Care Act (ACA, P.L. 111-148) will have a positive impact on health care for people with developmental disabilities. Launched in 2003, the Aging and Disability Resource Center (ADRC) initiative is a joint effort of the Administration on Aging (AoA) and the Centers for Medicare and Medicaid Services Bridging the Aging and Developmental Disabilities Service Networks Page 5
Page 1 and 2: Bridging the Aging and Developmenta
Page 3: REPORT FUNDING This report was fund
Page 7 and 8: ADD should support AoA’s proposed
Page 9 and 10: INTRODUCTION Given the demographic
Page 11 and 12: coordinator, staff from the state d
Page 13 and 14: Future Planning. Many older parents
Page 15 and 16: 1. State Councils on Developmental
Page 17 and 18: Similarities between Objectives of
Page 19 and 20: with developmental disabilities, $9
Page 21 and 22: activities which support the indepe
Page 23 and 24: studies will also address health di
Page 25 and 26: The Patient Protection and Affordab
Page 27 and 28: • Risk-based managed care organiz
Page 29 and 30: National Alzheimer’s Project Act
Page 31 and 32: • Encourage middle-aged people to
Page 33 and 34: ADRC Outreach to People with Develo
Page 35 and 36: Table 3 compares the number of peop
Page 37 and 38: statewide ADRC Advisory Council as
Page 39 and 40: ADRC Role in the ACA CMS and AoA en
Page 41 and 42: concerns include protection from ab
Page 43 and 44: AoA and CMS envision that ADRCs wil
Page 45 and 46: waivers. ADD can increase its voice
Page 47 and 48: Goal C: Develop a workforce with kn
Page 49 and 50: 12 Braddock, D., Hemp, R., Rizzolo,
Page 51 and 52: 37 Centers for Medicare and Medicai
Page 53 and 54: HRSA I/DD IADLs ID IDEA IDHD IHP IL
Page 55 and 56:
Appendix 2 Summary of Testimonies o
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developed, in most states, a suffic
Page 59 and 60:
families. That really needs to chan
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utilizing well-trained staff. In pe
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Appendix 3 Memorandum of Understand
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Bridging the Aging and Developmenta
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Page 69 and 70:
Page 71 and 72:
• The Waisman Center, University
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Appendix 5 AoA Aging and Developmen
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WISCONSIN Grant Number: 90‐AM‐0
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NEW YORK Grant Number: 90‐AJ‐20
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VIRGINIA NAIC accession number: 013
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VIRGINIA agencies in Maryland and V
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MISSOURI Developmentally Disabled P
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HAWAII Grant Number: 90‐AM‐0677
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NATIONAL Grant Number: 90‐AM‐07
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Grant Number: 90‐AM‐0509 (AoA)
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NATIONAL FAMILY CAREGIVER SUPPORT P
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● There is a lack of background k
Page 95 and 96:
National Dementia and Intellectual
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Appendix 7 State Profiles of ADRCs
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eferral phone line which is a colla
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Wisconsin has a county system with
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developing discharge plans with pat
Page 105:
Charlotte McHenry, Vice President o
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