March 2003

Grant Results

SUMMARY

Starting in December 1995, staff at the State of New Hampshire Department of Health and Human Services sought to replicate the principles of the Monadnock Self-Determination Project (ID# 023006).

The Monadnock project, piloted in southern New Hampshire as part of the Robert Wood Johnson Foundation's (RWJF) Building Health Systems for People with Chronic Illnesses national program, had generated considerable interest among the developmentally disabled and their families in the state and resulted in significant cost savings, even for the most severely impaired persons.

The goal of this project was to imbed that pilot project's principles of client choice and authority within each of the state's 12 community-based agencies providing services to the developmentally disabled.

Key Results

  • To create an infrastructure that supported self-determination, project staff developed new management structures at the state and regional level and fiscal reporting protocols and evaluation procedures for provider agencies.
  • They engaged staff and other stakeholders in each region in collaborative activities, training events and leadership development.
  • The project also worked to revise state rules and service definitions to reflect the value of client self-determination.
  • Service to 170 clients was phased in over the grant period.
  • After four years, 11 of 12 regional service agencies were changing their systems of care to foster more client prerogatives.
  • In the same time period, provider agencies within the regions were either examining or adopting the use of individual services budgets for their clients, a means of fostering greater client choice and control.

Funding
RWJF supported this project with a grant of $744,965 from December 1995 to November 1999.

 See Grant Detail & Contact Information
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THE PROBLEM

In the 1980s, New Hampshire developed what is considered to be one of the best long-term care systems in the nation for individuals with developmental disabilities and their families. It was the first state to close its residential institution for persons with mental retardation. It developed an effective community system which has had the consistent support of persons with developmental disabilities and their families and which has been highly rated by the ARC.

Fiscal pressures, coupled with interest among persons with developmental disabilities, their families and advocates, led to the inception of the Monadnock Self-Determination Project funded in the early 1990s by RWJF (grant ID# 023006) under the Building Health Systems for People with Chronic Illnesses national program.

The Monadnock project demonstrated the viability of shifting control of planning processes, service design and financial resources from the professional service system to the individuals and families receiving support. A key feature of this initiative was rebuilding the informal network of friends and family whose many functions typically have been supplanted by the paid professional service system.

Piloted in the southern region of New Hampshire, the project attracted interest among the developmentally disabled and their families and resulted in significant cost savings, even for the most severely impaired persons.

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THE PROJECT

This grant from RWJF provided support to New Hampshire's Department of Health and Human Services to make the transition from a system providing a menu of traditional programs and services for persons with developmental disabilities to a more consumer-driven system that emphasizes creative solutions to individual needs.

Staff at the department sought to replicate the Monadnock pilot in the 12 locally governed, community-based agencies that provide services to the developmentally disabled under contracts with the state. The goal was to create systemic changes to give individuals with disabilities and their families increased choice and control over their services and supports.

RWJF funds were earmarked primarily for staff — both at the state level and in the regional agencies — to lead and facilitate systems change and for technical assistance, to be provided by the national program office of RWJF's Self-Determination for Persons with Developmental Disabilities program, which was launched shortly after this grant began.

Technical assistance for case managers would focus on individual client-directed support planning, allocation of resources, problem solving around personal supports and engaging families and clients in designing a support system. Other technical assistance would be aimed at creating management information systems, budgeting and accounting and financial management at the state and local level.

A 40-member advisory committee representing consumers, parents, advocacy organizations, system staff, providers, members of the community and others guided the project. (For committee membership, see the Appendix.) The Community Support Network, the network of New Hampshire's 12 regional service agencies, in collaboration with state-level fiscal staff, developed fiscal reporting procedures to insure uniform cost reporting and comparative financial data across regions.

In order to jump-start the complex organizational changes that were needed, the project team engaged experienced facilitators to conduct training events based on specific area needs. (See the Bibliography, Sponsored Workshops, for a list of training events). The training helped clarify for stakeholders — consumers, parents, area agency staff and board members, providers and community members — the concept of increased client self-determination and was intended to develop project leadership.

Individuals with developmental disabilities were invited to participate in the project on a graduated basis as changes in the regional service agencies were phased in. Each agency offered its clients a planning process and a range of supports designed to give them more choice and control over needed services.

Other Funding

This project was supported by substantial in-kind contributions (estimated at $484,000) from the New Hampshire State Division of Developmental Services and the 12 regional service agencies. Collaborating New Hampshire-based organizations included the Institute on Disability at the University of New Hampshire, the Community Support Network, the Developmental Disabilities Council and People First of New Hampshire (a self-advocacy organization of people with developmental disabilities).

The national program office of the Self-Determination program provided not only technical assistance but also information about ongoing efforts in other states. Two contractors were hired to assist with the project evaluation: Butler Consultants of Hillsborough, N.H., to collect data, and Tom Reischl, Ph.D., of the University of New Hampshire's Institute on Disability, to analyze the data.

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RESULTS

  • The project helped make changes at the state level in regulations, client service definitions and agency approval processes necessary to support client self-determination.
    • He-M 503, a state regulation defining eligibility and service coordination, was revised in January 1999 to reflect the values of self-determination.
    • A new service definition, sought by the project and approved by the Health Care Financing Agency (the federal agency that administers the Medicaid program) in March 1997, defined the service unit as a day, rather than breaking the day into the categories of day services, residential services and employment services. This change, which affects reimbursement, allows clients more freedom and control in choosing among providers for different services.
    • The state incorporated self-determination goals into the process by which new contracts with the 12 regional agencies are approved. As part of the process by which agencies are redesignated as service providers, they must now report on their efforts to promote self-determination.
  • The project engaged 11 of the 12 regional service agencies in significantly transforming their systems of care to foster client self-determination. While each region was at a different stage in the process, all developed new care systems and trained staff in their implementation. The regional agency that initially declined to participate was incorporated into the project after the grant period ended.
  • The project enrolled 170 clients as project participants, providing each with an individual service budget. Such budgets mean that an agency is paid only for services actually needed and provided, which gives developmentally disabled individuals greater involvement and control in their relationships with providers. In addition to providing budgets for project participants, service agencies examined or created policies for forming individual budgets for all of their clients.
  • A statewide network of trainers, including consumers, family members and direct support professionals, was created. Some 70 individuals participated in full-day "Training of Trainers in Self-Determination" workshops held bimonthly in the third and fourth year of the grant, conducted by the training director of the Monadnock pilot project. Those trainers remain an essential resource for deepening and sustaining sought-after systems changes.
  • The project funded a number of regional grassroots activities that had the potential for systemic impact. Funded projects at People First of New Hampshire, LifeArt Community Resource Center and local chapters of self-determination advocacy groups included training events, conferences and other advocacy, outreach and dissemination activities.
  • The project created its own Web site, and funded two regional service agencies to create sites of their own. The project-wide Web site (no longer in existence) provided updated information on the state's efforts in client self-determination, its training activities, calendar of events, success stories and answers to frequently asked questions.

Evaluation

The project was evaluated via two surveys of participants and one survey of area agency staff.

  • The "Who Decides?" Survey. Designed and fielded by People First of New Hampshire, this survey asked participants the extent to which they make their own choices in the domains of home, work, services and community. For example: "Who decides what time you wake up?" "Who decides what your job or career should be?" "Who decides who you should invite to a meeting about yourself?" "Who decides how you spend your day?" Participants could respond, "I decide," "Someone else gives me choices or helps me decide" or "Someone else decides." Early in the project, 159 participants from 11 of the 12 regions completed the survey. Approximately one year later, the survey was administered again, with 57 participants from three regions providing data.
    • The second survey revealed that a significantly larger percentage of consumers were making more of their own decisions about services. Similarly, more people were making their own decisions about their involvement in the community and where they work, and two of the three regions show positive change in decisions concerning home. In general, the results showed a shift in the decision-making, with individuals making more of their own decisions that affect their lives.
  • The Satisfaction Survey. Upon entry into the project, 116 people answered 12 questions taken out of a much larger Adult Outcomes Survey conducted annually for the Health Care Financing Administration, now called the Center for Medicaid and Medicare Services; 20 completed the survey approximately one year later. Questions included: "Do you like the way you spend your days?" "Do you like where you are living now?" "Are their any activities you would like to participate in that you are not currently doing?" and "Do you think your case manager listens to you?"
    • Of those completing both surveys, 60 percent reported no change over time, with 70 percent of those expressing satisfaction both times. The survey was determined to be of limited use in evaluating the project.
  • The Organizational Change Survey. Administered during the third year of the project, this survey measured the extent to which the principles of self-determination were being internalized by area agency staff and vendors who arrange services for adults with developmental disabilities. Some 80 staff members from five regions completed the survey.
    • While the responses showed general support for the tenets of self-determination, managers expressed greater agreement than direct support staff, suggesting that more information and training opportunities are needed.

Communications

The project disseminated information about its effort through mailings, e-mails, its Web site (no longer in existence), sponsored statewide conferences and workshops and at regional and national conferences. Project staff gave numerous presentations at national meetings (e.g., the 1998 National Conference on Self-Determination in Minneapolis and the 1999 National Association of State Directors of Developmental Disabilities meeting in Alexandria, Va.), and provided additional support for self-determination advocates to attend and/or make presentations at a number of conferences. Information about the project has been shared with developmental service organizations in Canada, Holland, Scotland, England, Ireland and Japan. During 1999, the project also provided support to organizations in New Hampshire publicizing or advocating client self-determination issues. (See the Bibliography for details.)

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LESSONS LEARNED

  1. Progress toward systems change depends heavily on strong, consistent leadership at the local level. Leadership responses from the 12 regional agencies in this project ranged from resisting participation to providing enthusiastic and innovative support. Given the budget pressures and other political challenges that inevitably arise, a long-term leadership commitment is needed to maintain change.
  2. Effective leadership at the state level is crucial to making systems changes in state government; however, government is inevitably vulnerable to shifts in leadership and to politics. The disabled community was opposed to the state Commissioner of Health and Human Services, who left his post during the grant period. The project survived this period, and the new state commissioner, an early and enthusiastic proponent of this initiative, was fully committed to the values of this grant and this proved to be essential to moving forward.
  3. A project of this kind must reach staff at all levels to effect lasting systems change. Although this project appeared to change the thinking of top and middle management, line staff were only marginally aware of its philosophy.
  4. Cementing key collaborative relationships is essential. The project was initially slow to build information exchange and collaboration, particularly among regional service providers and the well-established Monadnock model. It took the commitment of a new project coordinator to establish collaborative processes that encouraged the cross-fertilization of ideas.
  5. Involving as many stakeholders as possible helps move systems change forward. Although time-consuming and labor intensive, engaging interested people and organizations in this project proved to be extremely valuable in broadening support for systems change.

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AFTER THE GRANT

The commitment to systems change and the principles of self-determination continue in each of the 12 service regions, with increased support from the New Hampshire state government. Plans are in place to expand training efforts for the line staff who have not been widely influenced by the project's client self-determination policies. Project staff are also working to secure revisions to two New Hampshire state regulations that reflect the principles of client self-determination:

  1. He-M 1001, which certifies residential facilities for disabled persons.
  2. He-M 521, which regulates the conditions by which family members can receive state reimbursement to care for a disabled person at home.

Investigators expected to complete ongoing project evaluations to be completed in 2001.

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GRANT DETAILS & CONTACT INFORMATION

Project

Project for Long-Term Supportive Services for Developmentally Disabled Residents of New Hampshire

Grantee

State of New Hampshire Department of Health and Human Services (Concord,  NH)

  • Amount: $ 744,965
    Dates: December 1995 to November 1999
    ID#:  027576

Contact

Susan Fox
(603) 271-5034
sfox@dhhs.state.nh.us
Stephanie Carmody
(603) 271-5551
scarmody@nhdds.org

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

New Hampshire Self-Determination Project Advisory Committee

John Ashbaugh
Senior Vice President
Human Services Research Institute
Cambridge, Mass.

Joe Bauer
Parent Advocate
Dover, N.H.

David Beverly
Board of Directors
Region VIII Moore Center Services
Manchester, N.H.

Stephanie Carmondy
Project Assistant
Bureau of Developmental Services
Concord, N.H.
(Ms. Carmondy is the ongoing contact for information. She can be reached at (603) 271-5551 or scarmondy@nhdds.org.)

Michael Cassasanto
Director
Office of Public Guardian
Concord, N.H.

Chris Charest
Consumer Advocate
Manchester N.H.

Tom Clairmont
President
Lakes Regional General Hospital
Laconia, N.H.

Ann Danc
Director
Developmental Services
Lutheran Social Services
Concord, N.H.

Bill Dillon
Financial Director
Region X Community Support Services
Atkinson, N.H.

Gunnar Dybwad
Professor Emeritus
Brandeis University
Wellesley Hill, Mass.

Mary Ellen Fortini
Program Coordinator
Bureau of Developmental Services
Concord, N.H.

Sue Fox
Director
Bureau of Developmental Services
Concord, N.H.

Martin Frank Consumer
Advocacy Advisor
Center Of Hope
Conway, N.H.

Bob Getchell
Co-Chair
People Power
Salem, N.H.

Catherine Gherardi
NH Mental Health and Developmental Services
Conway, N.H.

Andrew Horton
Board Member
NH Developmental Disabilities Council
Nashua, N.H.

Janet Hawkins
Statewide Advisor
People First of New Hampshire
The Concord Center
Concord, N.H.

Lynda Kahn
Rhode Island Division of Developmental Disabilities
Cranston, R.I.

Lori Karr
Director of Case Coordination
United Developmental Services Council
Lebanon, N.H.

David King
Executive Director
Lakes Region Community Services Council
Laconia, N.H.

John Kitchens
ENHanced Life Options Group
Laconia, N.H.

Susan Langle
Client and Legal Services
Division Developmental Services
Concord, N.H.

Paul Leather
Director
Division of Adult Learning and Rehabilitation
Concord, N.H.

Dick Lepore
Senior Advisor
Institute on Disability
Eliot, Maine

Herb Lovett
The Institute on Disability
Boston, Mass.

Dennis Meadows
Director
The Browne Center
University of New Hampshire
Durham, N.H.

Mark Mills
Region IV Developmental Services
Concord, N.H.

Terry Morton
Commissioner
New Hampshire Department of Health and Human Services
Concord, N.H.

Elizabeth Murphy
Region IX, Developmental Services of Strafford
Dover, N.H.

Tom Nerney
Co-Director
National Self-Determination Project
The Concord Center
Concord, N.H.

Jan Nisbet
Director
The Institute on Disability
Durham, N.H.

Amy Phillips
Coordinator
The Mentor Program
Granite State Independent Living Foundation
Concord, N.H.

Dorothy Pigeon
State Family Support Advisory Council
Berlin, N.H.

John Richards
Board President
New Hampshire Head Injury Association
Atkinson, N.H.

Larry Robinson
Co-Director
Granite State Independent Living Foundation
Concord, N.H.

Kathleen Sgambati
Deputy Commissioner
New Hampshire Department of Health and Human Services
Concord, N.H.

Donald Shumway
Co-Director
National Self-Determination Project
The Concord Center
Concord, N.H.

Jo-Ann Sowers
Coordinator
Natural Supports Project, The Institute on Disability
The Concord Center
Concord, N.H.

Marylou Sudders
Director
Division of Mental Health and Developmental Services
Concord, N.H.

Jim Tobin
Vice President
The Dream Team Self-Advocacy Group Center
Ossippee, N.H.

Lisa Wagner
Case Manager
Monadnock Developmental Services
Keene, N.H.

Douglas Watson
Program Coordinator
Bureau of Developmental Services
Concord, N.H.

Donna Woodfin
Director
Disability Rights Center
Concord, N.H.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Books and Reports

Self-Determination Manual. Concord, N.H.: Staff of Region IV, 1999.

A Self-Directed Life. Atkinson, N.H.: Staff of Region X, 1999.

Book Chapters

Fortini ME and FitzPatrick ME. "Inclusive Education: The 'Universal Design' for Promoting Self-Determination." In Restructuring for Caring and Effective Education: Piecing the Puzzle Together, 2nd Edition. R Villa and J Thousand (eds.), 2000.

Survey Instruments

"Who Decides?" People First of New Hampshire, fielded September 1998.

Sponsored Conferences

(This listing is for the period 1998–99.)

"1999 Family Support Conference," April 30–May 2, 1999, Bartlett, N.H. Over 106 participants including consumers, families, agency staff, state level staff, direct support professionals and vendors. One keynote presentation, 11 workshops.

"1999 Direct Support Professionals' Conference," November 1999. Over 100 participants.

Sponsored Workshops

(This listing is for the period 1998–99.)

"Training of Trainers," January 1998–present. 70 persons have been trained as trainers.

"Direct Support Professional Leadership: A Panel on Self-Determination," January 21, 1998, Manchester, N.H.

"Panel Discussion on Self-Determination with Project Coordinators and Self-Advocates," March 26, 1998, Brattleboro, Vt.

"Turning Service Delivery Inside Out," April 10, 1998, Concord, N.H. Attended by service coordinators, direct support providers, parents and advocates.

"What is Self-Determination and What's Happening in New Hampshire?" May 8, 1998, Concord, N.H. Attended by participants in the project.

"Choosing Services: What Difference Does It Make?" June 25, 1998, Hampstead, N.H.

"Unifying Our Communities: Seeking Local Solutions," June 26, 1998, Laconia, N.H. Attended by health care professionals, direct support professionals, mental health professionals, law enforcement, civic leaders, members of the clergy, consumers and educators.

"Advanced Leadership on Self-Determination Panel Discussion," September 18, 1998, Concord, N.H.

"Advanced Leadership on Self-Determination," October 9, 1998, Concord, N.H.

"Resources Are More Than Money," October 27, 1998, Manchester, N.H.

"Your Issues Around Self-Determination: Getting Ready to Meet with Area Agency Directors," November 6, 1998, Concord, N.H. Attended by individuals and families.

"A Panel on Self-Determination," November 18, 1998, Manchester, N.H.

"Using the Web More Effectively," November 20, 1998, Concord, N.H. Attended by regional project coordinators.

"Training of Trainers in Self Determination," February and June 1999. Attended by 31 participants, including consumers, families, providers and agency staff.

"Building Yourself Training," February and December 1999, Lakes Region Area Agency. Attended by 13 consumers.

"Building Your Self-Determination," March and May 1999. Attended by self-advocates.

"Abilities Awareness Program," March 1999. Attended by Board of Directors of Region XII Area Agency.

"Peer Mentoring Program," April 1999, Keene Region Area Agency. Attended by consumers.

"DreamQuest Workshop," June 1999.

"Individualized Budget Training," June 1999, Nashua Region Area Agency. Attended by vendor and agency staff.

"Together Workshops," August 1999, Nashua Region Area Agency. Attended by consumers, families and direct support professionals.

"Survey Preparation Days," October 2000. 36 participants working with the Adult Consumer Outcomes Survey.

"Decision-making Training," October 1999. Attended by Region XII Area Agency staff.

Presentations and Testimony

(This listing is for the period 1998–99.)

Mary Ellen Fortini, "The Robert Wood Johnson Grant and Its Impact on Supported Employment in New Hampshire," at the New Hampshire Supported Employment Network, March 19, 1998, Concord, N.H.

Mary Ellen Fortini, "Self-Determination: State of the States," at the Developmental Disability Nurses Association annual meeting, April 19–21, 1998, Huntington Beach, Calif.

Julie Donnelly and Jean-Paul Bovee, "Diversity is the one thing we have in common…celebrate it every day," at the 1999 Family Support Conference, April 30–May 2, 1999, Bartlett, N.H.

Patty Facto, panel discussion, at the New York Self-Advocacy Association's regional meeting, May 6, 1998, Lake Placid, N.Y.

Mary Ellen Fortini, "What is Self-Determination?" at the New York Self-Advocacy Association's regional meeting, May 6, 1998, Lake Placid, N.Y.

Jeannine Snyder, panel discussion, at the New York Self-Advocacy Association's regional meeting, May 6, 1998, Lake Placid, N.Y.

Mary Ellen Fortini, "Choices for a Brighter Future," panel discussion at the 1998 New Hampshire Family Support Conference, June 24, 1998, Bartlett, N.H.

Mary Ellen Fortini, presented and facilitated sessions at the Annual National Conference on Self-Determination, July 9–11, 1998, Minneapolis, Minn.

Mary Ellen Fortini, "Self-Determination and Being a Parent," at Region X Annual Meeting, October 15, 1998, Atkinson, N.H.

Mary Ellen Fortini, panelist, "Planning One's Own Future: Reports on the Self Determination Project" at Northeast Regional Conference on Autism, October 24, 1998, Cromwell, Conn.

Mary Ellen Fortini, "Self-Determination," to the participants of The Speaking for Ourselves Northeast Atlantic Self-Determination Conference, June 1999, Pennsylvania.

Mary Ellen Fortini, "Self Determination," to the Direct Support Professionals Conference, June 1999, North Conway, N.H.

Mary Ellen Fortini, "What Is Self-Determination?" at the People First New Hampshire Annual Conference, September 1999, Concord, N.H.

Sandra Pelletier, "Local Developmental Disabilities Authorities, Round Table Discussion" at Bringing Self-Determination into the Mainstream, 1999 Annual Meeting of the National Association of State Directors of Developmental Disabilities Services, November 16–18, 1999, Alexandria, Va.

Donald Shumway, "Thoughts on the Future of Self-Determination" at Bringing Self-Determination into the Mainstream, 1999 Annual Meeting of the National Association of State Directors of Developmental Disabilities Services, November 16–18, 1999, Alexandria, Va.

Susan Fox, Leslie Boggis, Chris Charest, Carole Thibodeau and Mary Trinkley, State of New Hampshire Panel, at Bringing Self-Determination into the Mainstream, 1999 Annual Meeting of the National Association of State Directors of Developmental Disabilities Services, November 16–18, 1999, Alexandria, Va.

"Making Self-Determination a Reality: The Experiences of Eight States" small group session at Bringing Self-Determination into the Mainstream, 1999 Annual Meeting of the National Association of State Directors of Developmental Disabilities Services, November 16–18, 1999, Alexandria, Va.

World Wide Web Sites

www.unh.edu/rwj (no longer in existence) The New Hampshire Self Determination Project Web site disseminated information regarding the New Hampshire initiative and served as a means for increasing communication among the 12 regions in the state, October 15, 1997.

Print Coverage

"Self-Determination," in The New Hampshire Challenge, Summer 1998.

Radio Coverage

"Health New Hampshire," Self-Determination in New Hampshire, Manchester, N.H., April 15, 1998.

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Report prepared by: Kelsey Menehan
Reviewed by: James Wood
Reviewed by: Karyn Feiden
Program Officer: Rosemary Gibson

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