Parent to Parent of Vermont and the Vermont Department of Health, Children with Special Health Needs (CSHN) collaborated in an effort to ascertain the perspectives of families of children with special needs regarding ways to improve the availability and delivery of meaningful and effective services. The process was funded by a grant, State Systems Development Initiative from the federal Maternal and Child Health Bureau. Both agencies hoped to utilize family feedback to create strategic plans that would meet the needs and utilize the strengths of families. This summary reports the methods used to gather information from families from August 1998 through April 1999. A brief description of the results and implications for Parent to Parent are presented to you here. Results and implications for Children with Special Health Needs are available through CSHN by calling Carol Hassler, MD.

Deep appreciation is expressed to all the family members who participated in this effort - the 420 people who returned questionnaires or who participated in interviews and the 173 who attended focus groups statewide.

How was the Information Gathered? There were four tools used for gathering information:

1. Telephone interview. Fifteen families were interviewed by Parent to Parent's Family Advisory Board. June 1998, Family members participating in Parent to Parent programs were asked a series of questions regarding their satisfaction with these programs. This information was used to develop a questionnaire.

2. Questionnaire. A questionnaire was developed by Naomi Tannen, a skilled consultant hired by CSHN and Parent to Parent, in collaboration with the boards and advisory groups of each agency. The questionnaire was specifically designed to gain information that would improve the availability and delivery of Parent to Parent and CSHN services. Questionnaires were distributed to 8,000 families throughout Vermont. 402 questionnaires were returned. None of the respondents answered all of the questions.

3. Focus Groups. Five Focus Groups were held; 1) following the annual Parent to Parent Partners in Care conference on December 4, 1998 with 44 attending, 2) Rutland with 40, 3) St. Johnsbury with 27, 4) Brattleboro with 21, and 5) Burlington with 41 attending.

All of the groups had waiting lists of people who wanted to attend but couldn't because maximum capacity had been reached. Families were invited to a three-hour dinner and conversation. Reimbursement and childcare stipends were made available to families. Invitations were sent with the general mailing and information was shared through the media in each area. Each family also completed the questionnaire. Naomi facilitated each focus group.

4. Final Work Group. Six families who had attended one of the focus groups and who were familiar with Parent to Parent and CSHN were invited to attend a final meeting. Five representatives from the two sponsoring agencies also attended. The purpose of the meeting was to have families review the preliminary report and to give more concrete suggestions as to how Parent to Parent and CSHN, in collaboration with other agencies, could be responsive to families' input. Naomi also facilitated this meeting; verbatim notes were taken and transcribed.

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The Characteristics of Helpful Professionals

Families frequently mentioned professionals by name as having played a significant, positive role in their lives. Families want providers to:

Be compassionate and provide empathy. Understand the challenges of everyday life in a family with a child with disabilities.

Listen to the parent and value their input.

Be aware of the needs and strengths of the entire family.

See the child's disability in a holistic way - in the context of their family and community.

Be aware of developmental stages in a child's life and in the family's response to caring for a child with special needs.

Be knowledgeable, and give clear and full information

Have procedures that are not unduly complicated.

Collaborate and communicate between agencies, schools, and medical care.

Serve as advocates in the system; provide coordination and referrals.  ©

What Happened to the Data?

David Baker, a former member of Parent to Parent's Board of Directors, and working in the planning division of the Agency of Human Services, prepared a summary of the initial 15 telephone interviews and distributed to participants, Family Advisory Board members and Board of Directors. Information was used to inform the initial stages of Parent to Parent's strategic planning process that occurred from Sept 1998-May 1999.

David entered the data from all 404 returned questionnaires using Excel spreadsheets. He also prepared summary data cross coding to answer specific questions. Lynn Reynolds, chair of the Parent to Parent Board's Evaluation Committee, a researcher, and a pediatric psychologist, and Naomi Tannen, the survey facilitator, recorded qualitative responses from 200 questionnaires as of November 1, 1999. 204 remain to be coded. Lynn Reynolds also coded 100 questionnaires for the purpose of reliability.

 Back to Top (Note: Not all questions were answered by all respondents.)
1. Do you know about Parent to Parent of Vermont? Of the 392 people who responded to this question, 70% said yes, 30% said no.
2. If yes, how did you first hear about us? Most families heard about us from a friend, relative, other parents (21%), followed by referrals from agencies including the ARC, Federation, VPIC, and childcare providers (19%). Families identified referrals from other professionals including social workers, and therapists (18%); hospitals: NeoNatal Intensive Care Unit, Fletcher Allen Health Care and Dartmouth Hitchcock Medical Center (16%). Families also heard about us through the radio, magazines, flyers, and the phone book (13%); Family, Infant &Toddler Project (7%), and physicians only (6%).
3. Have you used Parent to Parent of Vermont's services? Of the 274 people who said they knew about Parent to Parent 59.5% said they had used Parent to Parent's services.
4. If yes, have the services met your needs? Of the 163 people who used Parent to Parent's services, 85%, said that it had met their needs.
5. How did Parent to Parent meet your needs? 171 families responded to this question. The most common example cited was information, followed by staff support, Parent to Parent matches and support from other parents or parent groups. Results included: Information (21%); support, advice, speaking with staff (16.9%); Supporting Parents Matches (16.3%); financial help (12.8%); other parents, parent groups (9.9%); Partners in Care Conference (5.8%); training and workshops (5.8%); Sibshops (4.6%); others (6.4%) were the Medical Education Project, respite, survey of diabetes, Artsability, and Newsletter.
6.  What do you wish Parent to Parent offered?  71 people responding to this question said:

• Offer services throughout the state. "Easier access" (29.5%) areas mentioned: Southwest VT, Upper Valley, St. Johnsbury, Newport, White River Jct., Brattleboro, Franklin, and Grand Isle.
• More information (21.1%) on specific disabilities, especially mental illness/autism and deafness and childcare, a more comprehensive library, more workshops.
• More support (18.3%). More opportunities to meet with other parents in groups. Mentioned were parents of teens, young adults, adults with disabilities, and parents of children with deafness.
• More advocacy (7%). Parent to Parent to be more involved, along with other agencies, in advocacy, legislation, and policies regarding schools.
• A youth network (4.2%). Especially for adolescents with special needs. Some suggestions included social and support opportunities for young children and teens, as well as children who were adopted which was mentioned as a specific group. The concept of teen mentors with disabilities for younger children was suggested.
• Respite (4.2%).
• Other suggestions (15.7%): Sibshops after age 12; free health club access; personal counseling and psychological support; staff trained on autism; childcare when parents attend training and for children with mental illness; more guidance on dealing with schools and where to get help; provide a network of parents to share information; a legal library; provide support groups in different locations; 24 hour line for emotional support.

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What Did We Learn?

Although CSHN and Parent to Parent sponsored this effort with the goal of helping guide their agencies strategic plans, the larger purpose was to acquire general information about parents' needs and strengths, and to identify how the system of providers could be more responsive. The information gathered through focus groups and the questionnaire is clearly applicable to all providers offering services to families who have children with special health needs. Parents frequently gave positive feedback that is very reinforcing for providers; they also were open about their frustrations and dissatisfactions, which may be harder to hear but ultimately crucial in systems planning.

Families identified the following when asked what has been helpful - the same areas families wished for with their "magic wand." The families who participated in this survey and focus groups were extremely generous in giving their time and sharing their insights. They clearly communicated that they did so in hoping that the system would listen and be responsive to the needs that they expressed. (#1 - 10 follows):

"The service needs to be supportive, not just there." "It is a respect issue; respect and equality are what is important." "Someone to listen to our experiences and offer suggestions - mostly a sympathetic ear." "I wish we had longer visits with doctors so that a feeling for our child could be developed." "We want ideas to help make our son's life easier." "Families need support from people who are trusting, accessible, non-judgmental, and there are no "power roles".

Suggestions for Positive Change:

• Train providers (particularly physicians and educators) in a family centered approach utilizing the knowledge gained in the Parent to Parent Medical Education Project.
• Recruit, train and make accessible family-centered in-home service providers such as attendants and skilled nurses.
• Include consumers in all forums designed to implement systems change and improve service delivery.
• Hire and train more respite workers and facilitate access to these workers.

#2

Information that is readily accessible about all resources relevant to a child with a particular special need

"Sometimes if you are not ready to assimilate the information you can forget it as soon as you hear it." "We need something concise that would be sent to all the major players - special educators, pediatricians, health care providers." "Some of you are saying how great the services are, and some of us have never heard of them!"

Suggestions for Positive Change:

• Agencies collaborate to create a resource booklet for families with children with special needs. Have this information widely disseminated in physicians' offices, schools, libraries, etc.
• Agencies collaborate to establish an 800 number for information and support to families who have a child with special needs.
• Utilize technology more effectively. Have computers accessible through libraries, agencies, physicians' offices, and hospitals including ICUs. Have web sites with information for families, and chat rooms to connect with other families with children with similar special needs.

#3

Support from other families who have children with special needs

"I would like to be in a support group so I can talk about my son's issues and hear about how others have coped." "The key word is support, to know that we are not alone." "It is so helpful to get together with other parents to ask about what they did when their child hit a particular developmental stage." "One-to-one support has been so helpful!"

Suggestions for Positive Change:

• Connect families to existing support networks
• Provide opportunities for parents to share information, support, and to socialize through ongoing groups, and semi-annual Focus Groups.

#4

Concrete assistance/flexible dollars.

"I wish there were funds for home supplies, toys, materials, and respite care." "Psychiatric services and counseling are too expensive for us to afford." "I am so glad that CSHN paid for expensive medical costs and transportation". "Parent to Parent paid for us to attend conferences."

Suggestions for Positive Change:

• Create more flexible funding for concrete services that families identify as essential to their well being. Systems for accessing these funds should be family-friendly, that is, free of excessive red tape and truly flexible.

#5

Social activities and mentors for children

"I wish there were social activities for my 13 year old, a social network where she could find acceptance among peers and develop friends." "I wish there was help with social situations, more places where children could be together and grow together."

Suggestions for Positive Change for social activities and mentors for children:

• Establish support/social/ activity groups for youth with disabilities, particularly adolescents.
• Make community activities accessible and welcoming to youth with special needs.
• Create a mentor program for children and adolescents to be matched with teens, young adults, or adults with similar disabilities.

#6

Advocate/coordinator of services

"I had 35 different people in my house in less than a year." "We need advocates, not just agency people who refer us along to someone else." "When a couple of agencies get together and there is the same tune it lends credibility." "I feel like I have to sell the positive aspects of my child." "I do it all myself with no help. I guess that says it all."

Suggestions for Positive Change:

• Coordinate services between agencies, school, and medical care to ease the burden on families that results from fragmented services.
• Family support organizations collaborate to help establish support groups, hold sessions such as the focus groups and be available for individual support and information.

#7

Transition Services/Long Term Care

"I am concerned about my child who is 17, that he have a smooth transition from high school to the real world." "I wish there were intentional communities in Vermont where parents and their kids with severe disabilities could grow old together in a non-judgmental environment." "What's in store after age 21?"

Suggestions for Positive Change:

• Develop transition services for youth with special needs entering adulthood, including more options for long-term care. Form a committee of parents and youth to hear their recommendations.

#8

Services available in the localities where people live

"We need more of a Parent to Parent presence in the Northeast Kingdom." "We can't find qualified providers here because of the salaries and the distance." "Services need to be based here, not 'up there.'"

Suggestions for Positive Change:

• Agencies collaborate to make a plan to assure that a presence is established throughout the state (especially in northern and southern areas) that would provide resources and support for youth with special needs and their families.

#9

In-home services provided by trained, supportive people

"I need a live-in, part-time nanny like Hazel from the old TV show!" "I have been allowed 15 hours a week for home health and there is no one to fill the position." "I am grateful for the mentor who is deaf and comes to the home."

"As a single, working parent, I would wish for one day off a week for myself. I have not had a day off to just stay at home and relax in about two years. I am physically drained most of the time, too tired to fill out this questionnaire any better." "I would like more respite dollars available, and an approved list of respite providers."

For #9 and 10, see respite focus group summary in this newsletter.

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Summary of Parents' Responses to Parent to Parent

Families appreciated the one-to-one support they received from Parent to Parent, as well as the opportunities to interact with other parents of children with special needs. They were grateful for information and support from Parent to Parent staff. Sibshops, conferences, ArtsAbility, and the Medical Education Project were all appreciated services for those with access to them. Parents' wishes were in the nature of wanting more of the above, especially in outlying areas around the state. They emphasized the following needs:

• Disseminate information broadly about Parent to Parent services.
• Educate other professionals in a family centered approach, especially physicians and school personnel.
• Become more active in legislative advocacy.
• Have information about resources more readily accessible.
• Provide more opportunities for parents to be together for support and to share information.
• Have information and support available at the time of diagnosis. Have more contact with the medical community.
• Provide more opportunities for children, especially adolescents, to be together for support and socialization - in groups and through one to one mentors.
• Collaborate with other agencies to assure provision of the above.

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