Statewide Parent Organization Demonstration Project


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STATEWIDE PARENT ORGANIZATION DEMONSTRATION PROJECT
FINAL REPORT
Nancy M. Koroloff, Ph.D., Project Evaluator Denise Stuntzner-Gibson, M.S.W., Research Assistant
Barbara J. Friesen, Ph.D., Project Director
Research and Training Center on Family Support and Children's Mental Health
Regional Research Institute for Human Services Graduate School of Social Work Portland State University P.O. Box 751 Portland, Oregon 97207-0751 (503) 725-4040 August 1990

The recommended citation of this publication is: Koroloff, N.M., Stuntzner-Gibson, D., & Friesen,·B.J. (1990). Statewide Parent Organization
Demonstration Project. Final Report. Portland, OR: Portland State University, Research and Training Center on Family Support and Children's Mental Health.
This publication was developed with funding from the National Institute on Disability and Rehabilitation Research, United States Department of Education, and the National Institute of Mental Health, United States Department of Health and Human Services (NIDRR grant number G0087C0222-88). The content of this publication does not necessarily reflect the views or poliCies of the funding agencies.

TABLE OF CONTENTS
Introduction ................................................................................................................................................... 1 Purpose and Objectives ............................................................................................................................ 1 Organized Project Activities ................................................................................................................. 2 Description of State Accomplishments
H a w a i i ............................................................................................................................................. 3 M i n n e s o t a ....................................................................................................................................... 9 Montana....................................................................................................................................... 13 Wisconsin .................................................................................................................................... 17 Virginia ....................................................................................................................................... 21 Hypothesis/Methodology.................................:..................................................................................... 25 Results............................................................................................................................................................ 25 Reference...................................................................................................................................................... 33 Appendix: Invitation To Bid............................................................................................................. 37

Introduction
The Statewide Parent Organization Demonstration Project exists as a result of the convergence of a number of influences. As the Families as Allies Conferences were held around the country, parents of children with emotional disorders were struggling to organize. In states with functioning parent support groups, this support was apparently an important service to parents. In states without parent support groups, parents were requesting this support in increasing numbers. It was also becoming clear that parents were an important source of input in efforts to improve service delivery. Parents who were not organized into a network were difficult to identify, inform or engage. Consequently, the National Institute on Disability and Rehabilitation Research and the National Institute of Mental Health jointly allocated $100,000 to be awarded to states for the development of statewide parent organizations. The Research and Training Center on Family Support and Children's Mental Health served as the conduit for funding and provided technical assistance and evaluation services to the demonstration projects. .
Purpose and Objectives
The Statewide Parent Organization Demonstration Project (SPODP) has two major goals: (1) to stimulate and support the development of model statewide parent organizations that have the capacity to provide technical assistance, information, support, and networks to parents and parent organizations within states; and (2) to evaluate the conceptualization, implementation, and outcome of these models to inform decision-makers about the most effective approaches in promoting such activity within states.
Further, specific objectives were identified that each of the funded parent organizations were expected to meet. These objectives provided a framework for project evaluation. The objectives were stated as follows:
By the end of the project year, each Statewide Parent Organization will develop the following capacities:
1. a mechanism for inexpensive, accessible two-way communication with parents on a statewide basis;
2. a resource service for disseminating print and visual media accessible on a low.cost basis to parents, professionals and parent groups statewide. If appropriate, an existing resource service may be expanded to include materials specifically relevant to parents of children with emotional disabilities; and,
3. support services, resources, information and visibility to develop and maintain ties with diverse groups and individuals throughout the state.
These capacities represent the essential framework within which the Statewide Parent Organizations provide the following services:
1. Referring parents to existing parent groups or to individual parents in their geographic area;
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2. Directing parents to existing agencies able to answer questions and make referr.als within the service delivery system;
3. Strengthening the network of parents and parent organizations by making a sustained effort to increase formal and informal contacts among individuals and groups;
4. Providing technical assistance and support to newly forming or ongoing parent support groups, including the latest information regarding services for emotional disturbances in children and adolescents and the range of community-based services to meet their needs;
5. Developing or enhancing a statewide parent organizational structure to provide information regarding pending legislation, state planning processes, and opportunities for public comment and testimony at relevant legislative and administrative hearings on a timely basis; and,
6. Providing special outreach to underserved groups of parents, such as low income parents, minority parents, etc.
The Statewide Parent Organization Demonstration Project is administered under the umbrella of the Families as Allies Project. Both projects focus on promoting the organization of parents of children with serious emotional disorders to give and receive support, acquire information about their children's conditions, and learn to advocate for their own children and for others.
Organized Project Activities
Between October 1988 and September 1989, the Statewide Parent Organization Demonstration Project funded five parent organizations to develop statewide parent networks and organizational structures. Existing parent organizations were eligible if their capacity to fulfill project objectives could be demonstrated. Potential applicants were recruited by sending an invitation to bid (See appendix) to each of the 215 parent organizations in the Parent Organization Directory and to an additional 75 organizations that had indicated an interest in being listed in the directory when it was updated. In addition, Child and Adolescent Service System Program (CASSP) and State Mental Health Representatives for Children and Youth (SMHRCY) personnel in each state were informed of this opportunity.
Forty-seven proposals were received from 38 states and the District of Columbia. Proposals were reviewed by a panel of I1ational experts, a local panel of parents and professionals, and staff. Five states were chosen to receive $20,000 each: Hawaii, Virginia, Wisconsin, Montana and Minnesota. The project leader from each of these states came to the Research and Training Center in November 1988 for two days of training and technical assistance.
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During the following ten months, telephone contact was maintained between the Research and Training Center staff and parent organization staff. The group met again in March 1989 in conjunction with the spring CASSP directors' meeting. With this exception, the parent organizations were on their own in developing a statewide structure most compatible with their states' needs.
The amount of money in this contract was not sufficient to build a new parent network where none existed. States chosen to receive funds during 1988-89 had the specified capacities at least partially in place and were already engaged in some of the activities listed. The resources needed to be supplemented to carry out current activities and to ensure future existence of the statewide parent organization; at least . part of each parent groups' efforts went into pursuing other sources of support (both monetary and in-kind).
Beginning in June 1989, the project evaluator made a site visit to each of the five parent organizations. The purpose of these visits was to observe the functioning of the statewide parent organization and collect data by interviewing the persons most involved in the organization's development.
Description of State Accomplishments
This section of the report examines the development of a statewide parent organization within each of the five states selected as a demonstration site. The situation varies according to the unique political and social conditions of the state. Several distinct approaches to the organization of parents have resulted. These unique models of organizational development will be explored along with the development and utilization of some of the services required in the contract. The description of each state project is followed by a summary of the quarterly data submitted by the project. Although different titles were used in each state, the person paid from grant funds or primarily responsible for the grant is referred to as the "project director."
HAWAII
Hawaii Families As Allies is a statewide parent organization which is not affiliated with any umbrella disability organization, and began as a parent support movement with a conference held in December 1986. The original conference was jointly sponsored by the Mental Health Association, the Children's Mental Health Services Branch of the State Department of Health, the Office of United Self-Help, and the Hawaii CASSP office. A staff member from Hawaii CASSP was instrumental in facilitating the development of the first support groups and in writing the grant that resulted in Hawaii Families As Allies becoming one of the five demonstration sites. This staff person served as project director for the Hawaii Families As Allies development effort; she recognized that her job was to help parents develop the statewide organization and then retire.
The Hawaii Association for Children and Adults with Learning Disabilities (HACLD) was the fiscal agent for this project. HACLD has provided Public Law 94-142 training and technical assistance to parents of children with emotional disorders on each island. The project director from Hawaii Families as Allies coordinated the fifty-hour training session on each of the neighboring islands, referred parents to the training and assisted parents in developing a "buddy system" after they were trained. This
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"men toring" method of assistance is considered particularly appropriate within the Native Hawaiian culture. Trained parents provided support to other parents in the form of advocacy assistance, emergency respite, transportation, referrals to appropriate agencies, information specific to certain problems, and supportive listening. These parent leaders received ongoing training through the Parent Leadership Training, which was designed and presented by the staff person from Hawaii CASSP to prepare parents for leadership in the statewide organization. The training was renamed Parent Empowerment Training and currently is conducted by the leaders of the Hawaii Families As Allies.
. As a part of her CASSP activities, the project director recruited a parent to serve as county coordinator on each of the islands or major geographic areas. These county coordinators were paid a small stipend and required to make regular reports regarding their work with other parents. Each county coordinator was in regular telephone contact with the project director. At the beginning of the demonstration project, there were two formal support groups for parents of children with emotional disorders in Hawaii. Although county coordinators attempted to develop support groups in their areas, support groups were not appropriate mechanisms in some areas or for some groups. In these areas, informal support networks seemed most functional. On Maui, parents meet regularly in a support group called Parents Alliance for Caring Education (PACE). A group of parents continues to meet on Oahu and a small support group meets in urban Honolulu. Molokai parents meet regularly (Molokai Families As Allies) and have developed a brochure and information packet for parents. Overall, five support groups are meeting on a regular basis and involve about 25 parents.
The primary objective of Hawaii Families As Allies is to develop a support system that responds to the needs of families on state and local levels. The officers of the organization made a specific choice to focus on developing supportive networks and to postpone system advocacy movements until the organization became firmly established. Toward the end of the grant, the organization did participate in developing family support legislation. Individual parents have also been involved in system advocacy as committee members.
The momentum of this project was slowed by two separate incidents. In April, the project director was in a serious car accident and was minimally involved for most of the rest of the year. Although she was beginning to transfer leadership to parents at the time of the accident, her absence meant that some planned activities had to be forgone. The second incident involved a financial management error which forced Hawaii CASSP to end in June rather than the end of September. Hawaii CASSP provided the project director's salary and covered much of her travel expenses. At the time that the project director was ready to return to work from her accident, CASSP ended and she had to seek other employment. The momentum of parent organizing has not resumed after these two incidents.
Currently, a small core of parents provide the leadership for Hawaii Families as Allies. The president and president-elect have been active in the organization from the beginning and continue to be crucial to the life of the organization. The officers of the organization continue to offer the Parent Empowerment Training to parents from all over the state. The organization has a solid reputation with state agencies and human service providers, thereby providing a voice for parents at the state level. At this point, the organization has no paid staff or office. Funding for the organization is an ongoing issue and no new funding has been obtained.
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Evaluation Indicators

buarter 1

Hawaii Families as Allies Ouarter 2

la. # of telephone contacts by geographical area
.....
>. b. # offace-to-face contacts by area
4J 'ri U A. U c. # of contacts by letter for each area

~a. Kauai-19, Maui-20, Oahu-8, Molokai-17 Hilo-9, Kona-10, State Office-78, (total = 161)
b. Kauai-8, Maui-11, Oahu-1S, Molokai-42, Hilo-S, Kona-l2, State Office-57, (total = 150)
c. Kauai-l, Maui-O, Oahu-O, Molokai-3, Hilo-O, Kona-2, State Office-382, (total =388)

a. Kauai-40, Maui-25 Oahu-25, Molokai-19 Hilo 25, Kona-lO, State Office-122, (total = 266)
b. Kauai-31, Maui-9S, Oahu-97, Molokai-149, Hilo-87, Kona-80, State Office-139, (total=688)
c. Kauai-83, Maui-37S, Oahu-50, Molokai-SO, HiI0-7S, Kona-120, State Office-121S, (total = 1878)

Ouarter 3
a. Kauai-3S, Maui-17 Ohau-24, Molokai-40 Hilo-10, Kona-7, State Office-50, (total = 183)
b. Kauai-44, Maui-29, Oahu-214, Molokai-227 Hilo-7S, Kona-4, State Office-47, (total =640)
c. Kauai-2, Maui-3, Oahu-50, Molokai-7S, Hilo-2, Kona-2, State Office-127, (total = 261)

buartcr 4 ~a. No data available
b. No data available
c. No data available

1. # of names on the Family-to-Family

. 350

~. No data

~. No data

1. No data (Sept. only)

N

newsletter mailing list

>.
4J

2. # of items acquired by the resource

2. 62

~. 4

2.2

~. No data (Sept. only)

'ri U

library

VI


3. '# of items requested by area


U

3. Kauai-3, Maui-4 Molokai-2, (total=9)

~. Kauai-1, Maui-1, Oahu-2, Kona-3, (total =7)

3. Kauai-l, Maui-2, Oahu-1, Molokai-1, State Office-S,

l3: No data (Sept. only)

(total = 10)

1. # of educational forums or activities

!""\

by area

>.
4J

'r-!

U
2. Media monitoring and utilization

A.
3. # of statewide or national conferences,

U

meetings and trainings attended by

affiliates

, Molokai-20, State Office-23, (total = 43)
~. Plans still being developed ~. 11 (at least)

. Kauai-28, Maui-4S, Oahu-26, Molokai-20, Hilo-7, Kona-4, State Office-62, (total= 192)
2. No data 3. 7 (at least)

. Oahu-14, Molokai-17, HiI0-7, State Office-35, (total = 73)
2. No data 3. No data

tt. Maui--2
2. No data 3. 9 (at least)

Evaluation Indicators
..... 1. # of referrals by area (referrals made
e U were not categorized into support 'M groups or I&R services)
CIl

buarter 1
~. Oahu-2, Kona-2, State Office-5, (total = 9)

Hawaii page 2 buarter 2
1. Maui-7, Oahu-8, Molokai-10, Hilo-5, Kona-3, State Office-2O (total = 53)

buarter 3
1. Hilo-1S, State Office-1O (total =25)

buarter 4 ~. No data

1. Coordination of a statewide family

. In progress-scheduled for 1. Conference held; 800

~. Not applicable

conference

April 8, 1989

brochures distributed to

publicize the conference; 45

scholarships provided to ease

transportation costs; 69

individuals attended; parents

N 2a. # of trainings held, attended by

2a. 18 (at least)

from each county attended

12a. 6 (at least)

2a. Not specified


representatives from each geographical

U ..-f

area

>
1-4

b. Nature oftrainings


CIl

b. County Coordinator orien­ b. Parent Leadership Train­ tations; C.C. retreat; Parent ing Sessions; County

b. Not specified

0\

Leadership Training Insti­

Coordinator retreats; March

tutes sponsored by CASSP; Hawaii FAA workshop with

November, 1988 FAA meet­ the Exec. Director of

ing to prioritize prog­

the National Association

ram needs of families;

of Child Advocates;

legislative workshops

Hawaii FAA ·Parents as

(advocacy focused)

Professionals· conference

. Not applicable
2a.3
b. Parent Empowerment Train­ ing session; presentation on cross-cultural issues; technical assistance provided to the Child and Adolescent Mental Health Div. of the Dept. of Health

1. # of support-oriented contacts made with each area

M


e U
'M

with each area

CIl

3. # of contacts made to supply general

information by area

~. Kauai-3, Maui-8, Oahu-20 Molokai-30, Hilo-2, State Office-61, (total = 124)
~. Maui-3, Kona-5, State Office-61, (total=69)
~. Kauai-25, Maui-20,'Oahu-l, Molokai-12, Hilo-12, Kona­ 17, State Office-418, (total = 505)

. Kauai-40, Maui-107, Oahu­ 77, Molokai-141, HiI0-85, Kona-80, State Office-132 (total = 660)
2. Maui-6, Oahu-8, Molokai-2, Hilo-5, Kona-6, State Office-45, (total =72)
3. Kauai-87, Maui-330, Oahu 53, Molokai-45, Hilo-8S, Kona-127, State Office­ 1219, (total = 1966)

1. Kauai-56, Maui-39, Oahu­ 224, Molokai-237, Hilo-30, Kona-5, State Office-35, (total =626)
2. Maui-2, Hilo-25, Kona-S, State Office-17, (total = 49)

. Not specified by area--officers maintained weekly phone contact and met twice this quarter
2.. At least 6 contacts (not specified by areas)

3. Kauai-25, Maui-7, Oahu-50,
Molokai-88, Hilo-lO, Kona-3, State Office-127,
(total =310)

3. No data

.~~---

Evaluation Indicators
1. Nature of legislative activities
- ',-1
~Q.I
CI)
2. Media monitoring and utilization

buarter 1

Hawaii page 3 Quarter 2

Quarter 3

~. Sponsorship of parent par­ ticipants in legislative workshops on each island; Hawaii FAA will obtain a box at the State Capitol to receive all info about bills, agendas, meetings

. Parent Leadership Training . No data Sessions (Hawaii CASSP sponsored); March Hawaii FAA workshop; Hawaii FAA will assume responsibility for the Hawaii CASSP Par­ ent Leadershlp Training Program in June

2. Plans still being developed 2. No data

~. No data

buarter 4

~. Met with lobbyist from

MHA-Hawaii; working on

family support package with

State. Rep Dennis Arakaki;

discussions in the

Governor's office, Develop­

mental Disabilities

Coordinating Council, and

Hawaii Advocates for

Children and Youth

'. No data

I

'" 1. Development of family support networks
Q.I appropriate to specific cultural groups
U
~oM
Q.I
CI)

. Application of a personal approach-encouraging, developing and maintain­ ing friendships with all parents that are contacted

~. Same as Quarter 1

~. Same as Quarter 1

1. Same as Quarter 1 plus parents attended a workshop on cross-cultural issues on Maui

-.I

- -----­

--­ -­

-

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Statewide Parent Organization Demonstration Project