Participant-Direction General Resources

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Compendium of Evidence-Based Alzheimer’s Disease Interventions Volumes 1 and 2

Source: TAE
Attached is evidence-based compendium and report on Alzheimer's Disease interventions It has several components and represents a major effort to summarize the literature in the field.
(PDF)
(PDF)
Associated Date: September 2010

Providing Services for People with Dementia Who Live Alone: Issue brief

Source: TAE
The ADSSP National Resource Center reviewed the available literature and conducted interviews with people with Alzheimer’s and other dementias who live alone, caregivers and health care and social service professionals to obtain their views about the needs of people and potentially effective ways to meet those needs. It also describes programs that have been tested by community agencies to reach and help people with Alzheimer’s and other dementias who live alone and discusses related public policy and practice implications.
(PDF)
Associated Date: September 2010

Assistive Technology for People with Dementia and Their Caregivers at Home: What Might Help

Source: TAE
The ADSSP National Resource Center prepared this report to provide an overview of assistive technology (AT) products that are designed for persons with dementia and their caregivers. The target audience is the general public, caregivers, home and community service providers, and public programs that provide long-term care services and supports.
(PDF)
Associated Date: September 16, 2010

Developing and Implementing Self-Direction Programs and Policies: A Handbook

Source: National Resource Center for Participant Directed Services
This Handbook was developed by the staff at the Cash and Counseling Program Office to provide state staff, policymakers, service providers, program participants, and other stakeholders with a single comprehensive source of information about self-direction programs and policies.
(External Link) Caption: National Program Office for Cash & Counseling
(PDF)
Associated Date: May 04, 2010

Cash and Counseling National Program Office at Boston College

Source: Boston College
Cash & Counseling is a national program sponsored by The Robert Wood Johnson Foundation (RWJF), the Office of the Assistant Secretary for Planning and Evaluation in the United States Department of Health and Human Services (ASPE/DHHS), and the Administration for Community Living (ACL).

The website for the National Program Office includes resources and publications related to Cash & Counseling, including research findings, operating manuals, and examples of RFPs for fiscal management services.
(External Link)
Updated May 10, 2012

Improving HCBS Delivery Systems for Older Adults and Individuals with Disabilities: Redesigning Information Technology and Business Processes to Support Participant Control, Quality, and Cost Effectiveness

Source: HCBS Strategies for the ADRC-TAE
HCBS delivery systems that provide greater control to participants will likely have a positive effect on the participants' psychological and physical health. However, delivery systems that promise greater control, but have flaws that prevent that control from materializing may do more harm than good. Whether consumer-directed HCBS results in better outcomes largely depends upon how well the infrastructure that supports the delivery of these services is provided. This issue brief examines potential approaches to designing this infrastructure.
(Word)
(PDF)
Updated April 15, 2008

NRCPDS Program/Operations Toolkit
Source: NRCPDS
ACL funded the NRCPDS to create this Toolkit that provides the Aging and Disability Network with effective tools and resources to fully understand, implement, and manage participant-directed programs and systems. Additionally, there is a toolkit focused on Financial Management Services (FMS).
(External Link) Caption: Financial Management Services (FMS) Toolkit • File type: web
(External Link) Caption: Program/Operations Toolkit • File type: web
Associated Date: January 2013

2009 AoA/VA Meeting

Source: various presenters
Presentation slides and documents discussed during the February 2009 Aging Network and Veterans Health Administration Meeting held in Boston, MA.
(Powerpoint) Caption: Opening- Bob Hornyak and Lori Gerhard's presentation from the opening session (PPT)
(Powerpoint) Caption: Setting the Stage for VD-HCBS - Presentation by Lynn Kellogg (PPT)
(Powerpoint) Caption: Setting the Stage for VD-HCBS - Presentation by Ellen Mahoney (PPT)
(Powerpoint) Caption: Setting the Stage for VD-HCBS - Presentation by Joseph Zimmerman (PPT)
(Powerpoint) Caption: VD-HCBS Program Elements - Presentation by Lisa Alecxih and Tim Engelhardt (PPT)
(Powerpoint) Caption: VD-HCBS Program Elements - Presentation by Kevin Mahoney (PPT)
(Powerpoint) Caption: Making the Program Work - Presentation by Patrick Brady (PPT)
(PDF) Caption: Opening- Bob Hornyak and Lori Gerhard's presentation from the opening session (PDF)
(PDF) Caption: Setting the Stage for VD-HCBS - Presentation by Lynn Kellogg (PDF)
(PDF) Caption: Setting the Stage for VD-HCBS - Presentation by Ellen Mahoney (PDF)
(PDF) Caption: Setting the Stage for VD-HCBS - Presentation by Joseph Zimmerman (PDF)
(PDF) Caption: VD-HCBS Program Elements - Presentation by Lisa Alecxih and Tim Engelhardt (PDF)
(PDF) Caption: VD-HCBS Program Elements - Presentation by Kevin Mahoney (PDF)
(PDF) Caption: Making the Program Work - Presentation by Patrick Brady (PDF)
(PDF) Caption: Individual Budgeting Handout - A brief description and pros and cons of various methods for individual budgeting
(PDF) Caption: Q&A - Questions and answers addressing outstanding policy issues related to VD-HCBS that were raised at the meeting
Associated Date: February 2009

Moving Toward Person- and Family-Centered Care
Source: AARP Public Policy Institute
This Insight on the Issues from the AARP Public Policy Institute defines Person- and family-centered care (PFCC), highlights the importance of the family in a PFCC approach, and describes the key elements of PFCC in practice. Although research shows that PFCC improves quality of care and quality of life, it has not yet been fully integrated across health care and LTSS as an essential part of all care and support. However, the current shift in payment reform and service delivery away from disease or provider-focused models and toward incentives that reward better coordination, communication, and continuity of care, is likely to promote wider adoption and effective implementation of PFCC.
(External Link) • File type: web
(PDF)
Associated Date: March 2012

New Hampshire Home and Community Living Guide

Source: New Hampshire
This document can help individuals start an inventory of things they value most, and give them a chance to reflect on their strengths and abilities. By putting these ideas on paper, and reviewing them with family, friends and caregivers, individuals can help their loved ones carry out their plans, if they are not able to do so themselves.
(PDF)
Associated Date: July 2011

NRCPDS Resource Guide
Source: NRCPDS
2011 National Meeting Session: Utilizing Lessons Learned to Inform Participant Direction: A Closer Look at Controversial Topics
(PDF) • File type: doc
(Word) • File type: doc
Associated Date: September 2010

National Direct Service Workforce Resource Center
Source: Direct Service Workforce Resource Center
This CMS-funded technical assistance center helps states, community organizations, and providers to improve recruitment and retention of direct care workers, personal care attendants, direct support professionals and other members of the direct service workforce who support individuals with disabilities to live in home and community-based settings. The site includes a "Find a Worker" feature with links to states' worker registries.
(External Link)
Added December 15, 2010

Participant Direction During Difficult Budget Times: A Toolkit for State Policymakers and Advocates

Source: National Resource Center for Participant-Directed Services
As states struggle with extraordinary budget deficits, some are considering large cuts in programs and services, including participant direction. This National Resource Center for Participant-Directed Services (NRCPDS) Toolkit serves as a resource for informing decision-making about the importance of participant-directed services, including links to personal participant stories.
(External Link) • File type: pdf
Added October 13, 2010

Starting Financial Management Services in CLP & VDHCBS: Strategic Considerations

Source: Mollie Murphy, NRCPDS
This June 2, 2010 webinar presented strategies for program administrators to consider as they determine how to provide Financial Management Services in their Community Living and Veteran Directed HCBS programs. Topics include how to decide on a model of FMS (Agency with Choice or Fiscal/Employer Agent?), whether to contract for Financial Management Services, provide them "in-house" at the AAA, or use a hybrid approach. The call also explores two methods for procuring Financial Management Services.
(Internal Link) Caption: Webinar Recording • File type: .wmv
(Powerpoint) Caption: Webinar Slides- PPT
(PDF) Caption: Call Notes
(PDF) Caption: Webinar Slides- PDF
(PDF) Caption: Which Model of FMS Is Right for Your Program? - A tool to determine the best-fitting model of FMS for your program
(PDF) Caption: FMS Pre-Procurement Tip Sheet for developing an FMS procurement plan
Associated Date: June 02, 2010

Older Americans Act and Participant-Direction Call Notes

Source: Technical Assistance Exchange
On May 6, 2010 Bob Hornyak of AoA, Deborah Kuhn of AoA and Tim Engelhardt of the TAE discussed the usage of Older Americans Act funds for participant-directed services.
(Word)
(PDF)
Associated Date: May 06, 2010

Participant Direction Innovation Grants RFI

Source: The National Resource Center for Participant-Directed Services
The purpose of this RFI is to seek information that will assist the NRCPDS, in making an informed decision on which organizations it will solicit full proposals from in order to develop and implement an innovative practice or model that promises significant positive impact for participant direction and that can be replicated elsewhere.
(PDF)
Added May 20, 2010

Presentation from March 2009 ADSSP TA Call on Participant Direction

Source: National Resource Center for Participant Directed Services
This presentation from the National Resource Center for Participant-Directed services was given on March 18, 2009 by Kevin Mahoney and Sandra Barrett on an ADSSP TA Call.
(PDF)
Associated Date: March 18, 2009

Integration of Consumer-Directed Services into MN’s Home & Community-Based Service System

Source: Minnesota Department of Human Services
This presentation entitled "Integration of Consumer-Directed Services into MN’s Home & Community-Based Service System" was conducted by Jane Vujovich at the 2010 National Meeting in the AoA Grantees Meeting.
(Powerpoint)
(PDF)
Added March 19, 2010

Texas VD-HCBS Materials

Source: Texas
Resources from Texas VD-HCBS Programs in Dallas (Tarrant County AAA) and Central Texas.
Central Texas ADRC: VDHCBS Participant Guidebook for participants in the VD-HCBS program (general information about the program and many state-specific forms and documentation); Agency Culture Change presentation from 2010 National Meeting
Tarrant County AAA: VD-HCBS assessment tools (Sep 2011)
(Powerpoint) Caption: Central TX - "Transition to Participant Direction- Making Agency Culture Change Work" presentation by Thomas Wilson and Anna Hauser at the 2010 National Meeting (PPT)
(PDF) Caption: Central TX - "Transition to Participant Direction- Making Agency Culture Change Work" presentation by Thomas Wilson and Anna Hauser at the 2010 National Meeting (PDF)
(PDF) Caption: Tarrant County - Consumer Needs Assessment Questionaire
(PDF) Caption: Tarrant County - Instructions for Completing a VD-HCBS Needs Assessment
(PDF) Caption: Tarrant County - Tiered Model Example
(Word) Caption: Central TX - Service and Support Plan, Budget and Worksheets - Part 1
(Word) Caption: Central TX - Service and Support Plan, Budget and Worksheets - Part 2
(Word) Caption: Central TX - Information Sheet - Emergencies
(Word) Caption: Central TX - Information Sheet - Employment Application
(Word) Caption: Central TX - Information Sheet - Sample Employer Forms
(Word) Caption: Central TX - Information Sheet - Training Workers
(Word) Caption: Central TX - Information Sheet - Writing Your Job Ads
(Word) Caption: Central TX - Personal Care Worker Job Description
(Word) Caption: Central TX - VDHCBS Participant Guidebook
Associated Date: December 08, 2010

ADSSP Project Planning Tool - Arizona Policy Primer on Consumer Directed Care

Source: Arizona ADSSP Grantee
Policy primer to better understand key terms and issues in the Arizona health policy landscape.
(PDF) • File type: pdf
Associated Date: December 01, 2006

ADSSP Project Planning Tool Georgia Self-Directed Care Factsheet

Source: Georgia ADSSP Grantee
Factsheet that defines self-directed care in home and community based services.
(PDF) • File type: pdf
Updated December 28, 2010

ADSSP Project Planning Tool Georgia Self-Directed Care Guidebook

Source: Georgia ADSSP Grantee
Guidebook is designed to comprehensively lay out the elements of successful model programs in various geographic regions of Georgia.
(PDF) • File type: pdf
Updated December 28, 2010

ADSSP Project Planning Tool Nebraska ADDGS Consumer Directed Voucher Program

Source: Nebraska ADSSP Grantee
Report on Nebraska's Consumer-Directed Voucher Program for Caregivers that includes a caregiver support component.
(Word) • File type: doc
Associated Date: June 01, 2006

ADSSP Project Planning Tool North Carolina Project CARE

Source: North Carolina ADSSP Grantee
Report on North Carolina's Project CARE (Caregiver Alternatives to Running on Empty) targeted to serve rural, underserved, minority populations.
(Word) • File type: doc
Updated December 28, 2010

ADSSP Toolkits Consumer Directed Care

Source: ADSSP National Resource Center Studies
Toolkit describes how state officials can integrate dementia capability into consumer-directed programs to better serve the needs of people with dementia.
(PDF) • File type: pdf
Updated December 28, 2010

North Carolina ADDGS Grant Project

Source: ADSSP National Resource Center Studies
Report developed by the ADSSP National Resource Center that describes systems and sustained change in North Carolina.
(PDF) • File type: pdf
Associated Date: January 01, 2006

Implementing and Monitoring Financial Management Services in Consumer-Directed Programs

Source: NRCPDS
This is the Power Point presentation by Mollie G. Murphy given at the 2010 National Meeting during the session entitled Financial Management Services – Advanced Level - An Introduction to Financial Management Services in Consumer-Directed Programs.
(PDF)
(Powerpoint)
Updated March 2, 2010

ADRCs as a Vehicle for Culture Change

Source: New Hampshire ADRC, University of New Hampshire
This is the Power Point presentation by Susan Fox and Wendi Aultman given at the 2010 National Meeting during the session entitled ADRCs as a Vehicle for Culture Change.
(Powerpoint)
(PDF)
Updated March 3, 2010

Transition to Participant Direction:  Making Agency Culture Change Work

Source: NRCPDS
This is the Power Point presentation by Casey Sanders given at the 2010 National Meeting during the session entitled Transition to Participant Direction: Making Agency Culture.
(Powerpoint)
(PDF)
Added February 17, 2010

Empowering the Consumer: Agency Transition to Person-Centered Planning and Participant Direction for Elders

Source: Massachusetts ADRC & CLP
This is the Power Point presentation by Jeffrey Keilson and Christine Alessandro given at the 2010 National Meeting during the session entitled Transition to Participant Direction: Making Agency Culture.
(Powerpoint)
(PDF)
Updated March 2, 2010

An Introduction to Financial Management Services in Consumer-Directed Programs

Source: National Resource Center for Participant-Directed Services
This is the Power Point presentation by Mollie G. Murphy given at the 2010 National Meeting during the session entitled Financial Management Services – Beginner Level - An Introduction to Financial Management Services in Consumer-Directed Programs.
(Powerpoint)
(PDF)
Added February 17, 2010

Arkansas CLP Consumer Narratives and Testimonials

Source: Arkansas CLP
Arkansas' Community Living Program provides short vignettes of the consumers served in the community through CLP. Letters of thanks are also included.
(Word)
(PDF)
Added February 2, 2010

Person Centered Thinking Resource Guide

Source: Learning Community for Person Centered Practices and was authored by Michael Smull and Helen Sanderson
North Carolina's Person Centered Thinking Resource Guide describes the essential skills and tools needed to implement person-centered plans and keep them alive.
(PDF)
(PDF)
Updated January 7, 2010

Adding and Sustaining Consumer Direction in Aging Network Programs: Challenges, Insights, and Successes

Source: Technical Assistance Exchange
These documents were presented as part of the NRCPDS training on Dec. 15th 2009.
(Powerpoint)
(PDF)
Associated Date: December 15, 2009

Michigan CLP Participant Direction Tool

Source: Michigan
This tool connects demonstrates how participants can identify their desires and preferences as they move through the person-centered planning process. It is to educate both participants and professionals.
(PDF)
Updated December 15, 2009

Letter to State Medicaid Directors on Participant-Directed HCBS
Source: Centers for Medicare and Medicaid Services
CMS wrote this letter to states' Medicaid directors to provide additional guidance on section 1915(j)(4)(B)(ii) of the Deficit Reduction Act of 2005, which permits States to allow participants to use their individual budget for “permissible purchases†(i.e., to acquire items that increase independence or substitute for human assistance) to the extent that expenditures would otherwise be made for the human assistance. The guidance in this letter also applies to section 1915(c) Home and Community-Based Services (HCBS) waiver programs in which States elect to offer the self-direction opportunity and to permit participants to purchase “individual directed goods and services.â€
(PDF)
Added November 30, 2009

Ohio CLP Participant Training and Reference Guide

Source: Ohio
Ohio developed the handbook "My Care, My Way Program" to help consumers make informed decisions about directing their own care. The handbook provides assistance with all the steps related to taking responsibility for planning and directing one's own care at home.

(PDF)
Added November 2, 2009

New Hampshire's Transitions in Caregiving Participant Guide

Source: New Hampshire CLP
The Transitions in Caregiving program in New Hampshire is designed to give family caregivers more control over how they receive respite and other services. This Participant Guide is given to caregivers who are involved in the project.
(PDF)
Updated September 25, 2009

Illinois MFP Debit Card Documents for Participant-Directed Services

Source: Illinois Money Follows the Person Program
The Illinois Money Follows the Person Demonstration utilizes pre-paid debit cards in their participant-directed program. These documents describe the program's approach and were referenced on the September 2009 CLP TA Call.
(PDF) Caption: Description of Bridge Bank Cards
(PDF) Caption: Bridge Bank Card Requisition Form and Checklist
(PDF) Caption: FAQs on Bridge Bank Cards
Associated Date: September 09, 2009

Debit Cards for Participant Purchases in Community Living and Veterans-Directed Home and Community Based Services Programs

Source: National Resource Center for Participant-Directed Services
The following resources relating to the use of pre-paid debit cards in participant directed programs were provided by the National Resource Center for Participant-Directed Services as part of the September 2009 monthly CLP TA call.
(PDF) Caption: Pre-Paid Debit Card Chart
(PDF) Caption: Proposed Pre-Paid Debit Card Procedure
Associated Date: September 03, 2009

Presentation on Risk Management in Participant Directed Programs - June 2009 Monthly Call

Source: NRCPDS, Technical Assistance Exchange
This presentation by Suzanne Crisp of the National Resource Center on Participant-Directed Services describes strategies for risk management in participant-directed programs like VDHCBS or Cash and Counseling.
(Powerpoint)
(PDF)
Associated Date: June 17, 2009

GA NHD - Person Centered Programs The Future of Aging Services Presentation

Source: Georgia
This presentation, created by Georgia, explains elements of self-direction in various programs and discusses lessons learned in support options.
(Powerpoint)
(PDF)
Added May 17, 2009

American Bar Association Commission on Law and Aging - "Making Medical Decisions for Someone Else: A How-To Guide"
Source: The American Bar Association Commission on Law and Aging
This handbook offers guidance on steps to follow in making health care decisions for another, how to work within the health care system, resolving health care decision disputes and the most common situations faced by persons called on to make health care decisions for someone else.
(External Link)
Added April 20, 2009

Consumer Choice, Risk and Homecare - Massachusetts

Source: Elder Services of Merrimack Valley, MA
This May 2008 presentation by Mary DeRoo of the Elder Services of Merrimack Valley in Massachusetts describes the risk management system they use that manages risk while maximizing consumer choice and control.
(Powerpoint)
(PDF)
Associated Date: May 2008

Self-Directed Support System Overview, Consumer Direction Workshop - 2009 AoA/VA Meeting

Source: TAE, Boston College
This 3 page document lists the support activities and the entity responsible for performing the task. It was used as a resource during the Consumer Direction Workshop breakout session at the AoA/VA Meeting held in Boston in February 2009.
(PDF)
Associated Date: February 25, 2009

Pre-Procurenment of FMS Tip Sheet, Financial Management Breakout - 2009 AoA/VA Meeting

Source: TAE, Boston College
Before starting the procurement process for Financial Management Services (FMS), consider developing a pre-procurement plan. This handout outlines the process and was used during the FMS breakout session at the AoA/VA Meeting held in Boston in February 2009.
(PDF)
Associated Date: February 25, 2009

FMS Functional Requirments Toolkit, Financial Management Service Breakout - 2009 AoA/VA Meeting

Source: TAE, Boston College
This tool lists some requirements that providers of Financial Management Services (FMS) must have or may choose to have. It was used as handout at the Financial Management Services breakout session at the AoA/VA Meeting held in Boston in February 2009.
(PDF)
Associated Date: February 25, 2009

Consumer-Direction Module Handout, Consumer Direction Workshop Breakout - 2009 AoA/VA Meeting

Source: TAE, Boston College
This handout overviews the goals and objectives of a consumer direction module. It was used during the Consumer Direction Workshop breakout session at the AoA/VA Meeting held in Boston in February 2009.
(PDF)
Associated Date: February 25, 2009

Implementation of Consumer-Directed Services for Persons With Intellectual or Developmental Disabilities

Source: hcbs.org
This research brief summarizes the results of a national study on the status, implementation, and degree of consumer control across states.
(External Link) • File type: web
Updated April 22, 2009

Setting the Stage for VDHCBS, Wilson Presentation - 2009 AoA/VA Meeting

Source: TAE
This is Mary Wilson's presentation from the Setting the Stage for VDHCBS session at the AoA/VA Meeting held in Boston in February 2009.
(Powerpoint)
(PDF)
Associated Date: February 24, 2009

Setting the Stage for VDHCBS, Ditto Presentation - 2009 AoA/VA Meeting

Source: TAE
This is William Ditto's presentation from the Setting the Stage for VDHCBS session at the AoA/VA Meeting held in Boston in February 2009.
(Powerpoint)
(PDF)
Associated Date: February 24, 2009

Financial Management Services Workshop, Grotpeter Presentation - 2009 AoA/VA Meeting

Source: Boston College
This is Mollie Grotpeter's presentation for the Financial Management Services Workshop breakout session at the AoA/VA Meeting held in Boston in February 2009.
(Powerpoint)
(PDF)
Associated Date: February 25, 2009

Financial Management Services (FMS) 101

Source: NRCPDS
This is an introduction to financial management services (FMS) for participant self-direction programs. It was originally presented on a Technical Assistance call on January 14, 2009.
(Powerpoint)
(PDF)
Associated Date: January 14, 2009

Worker Registry Presentation - Monthly Call Presentation - January 3, 2008
Source: PHI
This is Dorie Seavey and Hollis Turnham's presentation from the January 2008 call, entitled "Expanding the 'Registry' Concept: Creating Access to Care for Consumers and Employment for Care Workers."
(PDF)
Associated Date: January 03, 2008

Selected State Worker Registry Websites - Monthly Call Handout - January 3, 2008
Source: PHI
This two-page handout developed by PHI lists state HCBS worker registry websites and other resources related to the topic.
(Word)
(PDF)
Associated Date: January 03, 2008

A Guide to Quality in Consumer Directed Services

Source: Scripps Gerontology Center, Miami University
This guide is designed to provide states and programs involved in consumer-directed services with a practical handbook on ensuring and improving the quality of services. This guide is based on a philosophy that the views of the major program stakeholders consumers, families, program staff, regulators, funders are the necessary starting point for the design of a quality system.
(PDF)
Associated Date: May 2004

Cash and Counseling Final Report

Source: Mathematica Policy Research
This is the final report on the original Cash and Counseling demonstration. It summarizes the findings from five years of research by Mathematica Policy Research, Inc. on how each of the three demonstration states implemented its program, and how the programs have affected the consumers who participated, the consumers’ paid and unpaid caregivers, and the costs to Medicaid.
(PDF)
Associated Date: August 2007

Moving From Place To Place Guide

Source: Maine
Maine published this Consumer navigation guide for seniors involved in health care transitions.
(Word)
(PDF)
Updated February 5, 2008

Individual Providers: A Guide To Employing Individual Providers Under Participant Direction
Source: Human Services Research Institute and The MEDSTAT Group, Inc.
This monograph discusses program design considerations to assist as states move toward greater individuality and flexibility in the provision of services and supports. The paper outlines topics to consider when expanding opportunities for participants to choose and direct individual who provide assistance, including the risks/benefits arrangements, provider qualifications, training, person-centered planning, the case manager role, and safeguards to prevent abuse, neglect and exploitation.
(External Link)
Updated November 20, 2007

Consumer Budget Worksheet
Source: Heart of Texas Real Choice Program, Texas
This worksheet template assists clients in establishing a monthly budget.
(Word)
(PDF)
Updated December 12, 2007

La Crosse County Self-Directed Supports

Source: La Crosse Co., Wisconsin
This document describes the type of involvement that members of Care Management Organizations in La Crosse County, WI can have in determining services.
(PDF)
(Word)
Updated November 20, 2007