Despite their many accomplishments and enduring systems improvements, most Grantees described continuing barriers to community living for people of all ages with disabilities. These barriers include insufficient funding for home and community-based services and for infrastructure changes; lack of affordable, accessible housing and transportation; continuing difficulty in recruiting and retaining direct care workers because of low wages and lack of benefits; and outdated or inflexible administrative, statutory, and regulatory provisions.
This report provides an overview of 73 Grantees’ initiatives to improve their long-term services and supports systems and the enduring systems improvements they achieved. It includes lessons learned and recommendations that can guide states that are undertaking similar initiatives. As the population ages, increasing the demands on the service system, these Grantees’ efforts will prove invaluable, helping states to provide a greater choice of high-quality participant-directed home and community-based services. These services will enable people of all ages with disabilities or chronic illnesses to live in the most integrated setting consistent with their needs and preferences.
Report Overview vii
Methods viii
Organization of This Report viii
Enduring Systems Improvements ix
Personal Assistance Services and Supports (PASS) ix
Money Follows the Person Policies (MFP) ix
Self-Directed Services ix
Quality Assurance and Improvement ix
Lessons Learned and Recommendations x
Involving Participants and Stakeholders x
Specific Recommendations xi
Approaches to Bringing about Systems Change xiii
Recommendations for Changes in State and Federal Policy xiii
Conclusion xvi
Part 1
Community-Integrated Personal Assistance
Services and Supports Grantees 1
1Section One. Overview 1
Enduring Systems Improvements 1
New Policies to Enable and Support PASS and Self-Directed PASS 2
Increased Options for Self-Directed PASS 2
Increased Access to PASS 3
Improved PASS Quality for Persons with Serious Mental Illness 3
New Methods to Help Participants Recruit and Retain Workers 4
Systems Improvements Beyond the Grant Period 5
Continuing Challenges to Systems Improvements 5
Funding Issues 5
Policy Challenges 5
Workforce Issues 6
Lessons Learned and Recommendations 6
Lessons Learned 6
Recommendations 7
Section Two. Individual CPASS Grant Summaries 9
Arizona 11
Connecticut 15
Louisiana 19
Massachusetts 23
Nebraska 29
Oregon 31
Texas 35
Virginia 39
Part 2
Money Follows the Person Grantees 1
2Section One. Overview 1
Enduring Systems Improvements 2
New Assessment and Budgeting Process for Individualized Portable Budgets 2
New MFP Funding Mechanism 2
New Infrastructure/Funding to Support Transition Services and MFP Policy 3
Increased Access to and Funding for HCBS 4
Increased Access to and Funding for Supported Housing 4
New Process to Involve Consumers in Policy Development 4
Continuing Challenges to Transition and Balancing 5
Lack of Funding for HCBS 5
Lack of Affordable and Accessible Housing 5
Medicaid and State Policies and Practices 6
Lessons Learned and Recommendations 6
Lessons Learned 7
Recommendations 7
Section Two. Individual MFP Grant Summaries 11
California 13
Idaho 17
Maine 19
Michigan 23
Nevada 29
Pennsylvania 33
Texas 37
Washington 41
Wisconsin 45
Part 3
Independence Plus Grantees 1
3Section One. Overview 1
Enduring Systems Improvements 2
New Infrastructure for Self-Direction Programs 2
New IP Option in Waiver or State Plan Program(s) 6
Continuing Challenges to Systems Improvements 8
Lessons Learned and Recommendations 9
Lessons Learned 9
Recommendations 9
Section Two. Individual IP Grant Summaries 13
Colorado 15
Connecticut 19
Florida 23
Georgia 27
Idaho 31
Louisiana 35
Maine 39
Massachusetts 43
Michigan 47
Missouri 53
Montana 57
Ohio 61
Part 4
Quality Assurance and Quality Improvement in Home and Community-Based Services Grantees 1
4Section One. Overview 1
Enduring Systems Improvements 1
New/Improved Methods to Measure Participant Satisfaction and Other Outcomes 3
New/Improved Provider Standards or Monitoring Tools 5
New/Improved System to Collect, Analyze, and Report Quality Data 5
New/Improved Process or System to Help Ensure Continuous Quality Improvement in Services 6
New/Improved Critical Incident Reporting and/or Remediation Process or System 8
New Methods to Involve Participants in QA/QI Processes and Policy Development 9
Continuing Challenges 10
Lack of Funding 10
Organizational and Administrative Issues 10
Information Technology and Data Collection Issues 11
Policy and Practice Issues 11
Stakeholder Involvement 11
Lessons Learned and Recommendations 12
Lessons Learned 12
Recommendations 13
Section Two. Individual QA/QI Grant Summaries 19
California 21
Colorado 25
Connecticut 29
Delaware 33
Georgia 37
Indiana 41
Maine 47
Minnesota 51
Missouri 55
New York 59
North Carolina 63
Ohio 69
Oregon 73
Pennsylvania 77
South Carolina 81
Tennessee 85
Texas 89
West Virginia 93
Wisconsin 97
Part 5
Family to Family Health Care Information
and Education Center Grantees 1
5Section One. Overview 1
Results 2
Providing Information and Referral Services 3
Developing Informational Materials 3
Providing Education and Training 3
Improving Programs and Informing Policies 4
Lessons Learned 4
Recommendations 5
Policy Issues 5
Services and Supports 6
Section Two. Individual FTF Grant Summaries 7
Alaska 9
Colorado 11
Indiana 13
Maryland 15
Montana 19
Nevada 21
New Jersey 23
South Dakota 27
Wisconsin 29
Part 6
Feasibility Study and Development Grants 1
6Overview of Respite for Adults and Children Grants 1
Individual Respite for Adults Grant Summaries 3
California 5
New York 7
Ohio 9
Rhode Island 11
Individual Respite for Children Grant Summaries 13
Alabama 15
Arkansas 17
Maryland 19
Michigan 21
Oregon 23
Rhode Island 25
Overview of Community-Based
Treatment Alternatives for Children Grants 27
Individual CTAC Grant Summaries 29
Illinois 31
Maryland 33
Massachusetts 35
Mississippi 37
Missouri 39
Texas 40
Exhibit 1-1. FY 2003 CPASS Grantees 1
Exhibit 1-2. Enduring Improvements of the CPASS Grantees 1
Exhibit 2-1. FY 2003 MFP Grantees 1
Exhibit 2-2. Enduring Systems Improvements of the MFP Grantees 2
Exhibit 3-1. FY 2003 Independence Plus Grantees 1
Exhibit 3-2. Enduring Systems Improvements of the IP Grantees 2
Exhibit 4-1. FY 2003 QA/QI Grantees 1
Exhibit 4-2. Enduring Systems Improvements of the QA/QI Grantees 2
Exhibit 5-1. FY 2003 Family to Family Grantees 1
Exhibit 6-1. FY 2003 RFA Grantees 1
Exhibit 6-2. FY 2003 RFC Grantees 1
Exhibit 6-3. FY 2003 CTAC Grantees 27