Service Providers who "feel deeply" and who "see clearly"
A. Family-Centered Principles in Practice
Family centered, supportive, respectful, and knowledgeable providers
Information that is readily accessible about all resources relevant to
a child with a particular special need
Support from other families who have children with special needs
Financial assistance/Flexible dollars
Social activities and mentors for children
Advocate/Coordinator of services
Transition services/Long term care
Services available in the localities where people live
In-home services provided by trained, supportive people
Respite
Parent to Parent of Vermont
Children with Special Health Needs ProgramsJuly, 1999
This process was funded by a grant,
State Systems Development Initiative from the federal Maternal and Child
Health Bureau. The survey was conducted from December, 1998 through May,
1999.
II. METHODS
Questionnaires were distributed
to 8,000 families throughout Vermont who have a child with physical and/or
emotional special needs. 402 questionnaires were returned. In addition,
there were five Focus Groups held: at the annual Parent to Parent Partners
in Care Conference, in Rutland, St. Johnsbury, Brattleboro, and Burlington.
Supper was served and there was reimbursement available for childcare and
transportation. Invitations were sent with the general mailing and through
the media in each area. A total of 169 parents attended the meetings. In
addition, there was a final Work Group held to ask parents for feedback
on the information gleaned. Six parents who were very familiar with Parent
to Parent and CSHN services were invited to that session. The questions
that framed the process of gathering information were:
III. FINDINGS AND RECOMMENDATIONS
Clearly, the majority of parents are resilient, tenacious, and knowledgeable, as they need to be in order to cope with the challenges of their everyday lives. Their stories of coping with their children’s medical and psychological needs, often in a hostile or indifferent environment were poignant. Parents’ commitment to their children was profound, and many parents expressed the feeling that although their greatest wish was that their child not have to deal with his/her disabilities, they had learned so much from living with and loving their child. Parents frequently used the words "exhausted" and "drained" to describe their feelings. One can only be humbled, and have a deep respect for families for whom life has presented these special challenges.
The dominant message at all the
meetings was that parents are appreciative of those services that they
receive which they perceive as truly responsive to their needs. They are
grateful to providers who listen to them and respect their knowledge about
their children, and include them in all planning and decision making. However,
they are often frustrated by the lack of appropriate services, and the
fact that some services that are available often hurt more than they help
because of the manner in which they are delivered.
In the groups and the surveys, parents often described with passion the characteristics they desire in the system and in the providers of care for their children. These characteristics are placed at the very head of the "Findings" because they infuse all priorities and all care settings.
Parents clearly have significant strengths that can ease the burdens of both other parents and professionals. The following are examples of their potential contributions:
Advocacy. Parents spoke of having gained skills in advocating for their child. They could accompany other parents to meetings (particularly at schools, also other settings) to provide support and advocacy. They are also interested in legislative advocacy.
Support. Family members spoke of being willing to set up support groups, establish a support center, and provide one to one support to other parents. They appreciated the opportunity to do that through being a Parent to Parent Supporting Parent, and through CSHN.
Case management skills. Parents have learned to advocate, communicate, and coordinate services (being a case manager) for their own child. They can share these skills with others.
Dissemination of materials regarding services, Parent to Parent and CSHN, and other resources and information. Parents offered to distribute this information to physicians offices, schools, libraries, mental health centers, etc.
Volunteer services. Parents would offer their time to assist in various programs, for example, helping in Artsability and Sibshops in outlying areas.
Utilizing particular skills that parents have. Some skills that were mentioned were: legal skills, computer skills, group facilitation skills, fund raising skills. The skills, knowledge and compassion that parents have learned "on the job" are a vast untapped resource. It is a challenge to service providers to learn to utilize these strengths. In answer to the question as to whether their strengths were being utilized a parent said, "They are not at the moment, but I am always willing and available!"
The following are the areas that were most frequently identified, in the focus groups and questionnaires, as having been helpful. They were also the same areas that people wished for if they could have a "magic wand". The families who participated in this survey were extremely generous in giving of their time and sharing their insights. They clearly communicated that they did so in the hope that the system would be responsive to the needs that they expressed. This survey process reports families’ priorities. Following each priority are further concrete suggestions which operationalize those priorities so that the service system(s) can let families know that they have been heard.
Information
that is readily accessible about all resources relevant to a child with
a particular special need.
"Some of you are saying how great the
services are and some of us have never heard of them!"
Further concrete suggestions to help accomplish this priority:
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."
Further concrete suggestions to help accomplish this priority:
Financial
assistance/flexible dollars"I am so glad that CSHN paid for expensive
medical costs and transportation"
Further concrete suggestions to help accomplish this priority:
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."
Further concrete suggestions to help accomplish this priority:
Transition
services/long term care"I am concerned about my child who is 17,
that he have a smooth transition to the real world."Services
available in the localities where people live "We can’t find qualified
providers here because of the salaries and the distance."
Further concrete suggestions to help accomplish this priority:
Parent to Parent, and Children with Special Health Needs were overwhelmingly seen as helpful. Of the 163 respondents that used Parent to Parent’s services, 138 (85%) said that the services met their needs. "Everything I found out about was through Parent to Parent."
Of the 266 respondents that used
CSHN’s services, 211 (79%) said that their needs had been met. "CSHN
services are far and above spectacular."
Parent to Parent of Vermont
This section summarizes all the
responses that were specific to Parent to Parent from the 402 questionnaires
and the Focus Groups and Work Group. It is striking that in both
the questionnaires and the Focus Groups the responses of parents regarding
Parent to Parent were overwhelmingly positive. People generally expressed
gratitude for the services provided, both the content and the manner in
which they were delivered. Although, there were suggestions as to broadening
services, no one questioned the value of the offerings currently available.
There were a minimal number of complaints as to lack of responsiveness
– calls not answered promptly enough, etc. Parents recommendations were
in the nature of wanting Parent to Parent’s services to be more broadly
available and to have the information about Parent to Parent disseminated
widely.
Eighty-five percent of people who said they had used Parent to Parent’s services said that it had met their needs. In answer to "How?" the most frequent responses listed were: information, support and advice, supporting parent matches, financial help, other parents, conference, training and workshops, and sibshops. There were suggestions for broadening services, but no critical comments that questioned the value of the services currently being offered. 70% of respondents said that they knew about Parent to Parent. The largest number had heard about it through friends, relatives or other parents, next was other agencies, (particularly CSHN and CDC), then individual professionals, hospitals, the media. Only 9 respondents said that they had heard about Parent to Parent from physicians.
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, newsletters, Artsability, and the Medical Education Project were all appreciated services. Parents wishes were in the nature of wanting more of the above, especially in outlying areas around the state. They emphasized the following needs:
It was evident from both the questionnaires and groups that CSHN is a primary source of services for families who have a child with special health needs. Of the 386 people who responded to the question, "Do you know about CSHN?" 80% said yes. Of that group, 86% said they had used CSHN services and 79% of those said the services had met their needs. In order of frequency of response, the services most often mentioned were: financial help, clinics, specific services (e.g. nutritionist, developmental pediatrician), support "people available to talk to" "patient, caring people", information, evaluations/assessments, respite, adaptive equipment, coordination of services. It is important to note that the comments about services from CSHN in both the questionnaires and at the Focus Groups were overwhelmingly positive. In the responses to general questions about what was helpful and not helpful it was not always possible to tell whether a service being alluded to was offered by CSHN. For example, a respondent might express appreciation for being able to see a specialist in Boston, without mentioning whether CSHN had a role in that referral. Therefore, this section of the analysis of data only uses specific references to CSHN, FITP, CDC, or Department of Health, or to specific clinics offered by CSHN.
Most families with children with special health needs seem to be aware of the services offered by CSHN. Referrals are made primarily by the medical establishment and human service agencies. Families appreciated the financial help, clinics, consultations and services from experts, information, assessments, respite, and adaptive equipment. They also expressed gratitude for the support they received from CSHN staff.
Parents' wishes for increased and improved service from CSHN emphasized:
D. FAMILIES' COMMENTS ABOUT OTHER COMPONENTS
OF THE SYSTEM OF CARE FOR CHILDREN WITH SPECIAL HEALTH CARE
NEEDS
Although this survey was sponsored
by CSHN and Parent to Parent with the goal of helping them with their strategic
plans, the larger purpose was to acquire general information about parents’
needs and strengths, and how the system of providers could be more responsive.
The information gathered through this study 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.
Parents identified other agencies, and often individuals within these agencies,
as being very helpful. The Family, Infant, Toddler Program, Vermont Parent
Information Center, Federation of Families for Children’s Mental Health,
specific schools, mental health centers, and many other agencies were listed
as providing support and assistance.
Medical and education are the areas
that most impact on families with a child with disabilities. Both of these
systems have the potential to very significantly enhance the lives of families.
They can offer important care, information, hope and support. They also
have the potential to increase the suffering and burden to families. This
study revealed both of these potentials. Many families expressed great
appreciation to physicians and nurses who were compassionate, knowledgeable,
accessible, and respectful. They also identified particular school systems
and educators who worked with them in partnership and contributed greatly
to their children’s quality of life. On the other hand, many parents expressed
what could only be called "despair" in their feelings of rejection, denigration,
and what they perceived as punitive responses sometimes from doctors and
all too frequently from schools. The difference seemed to be in individual
providers and also in particular school systems. It would seem important
to look at systems and individuals that families praise to learn what is
working, as well as looking at those systems that parents cannot tolerate
to see what is not working. Perhaps partnerships between the two could
be created for peer training.
The Primary Care Provider: Medical Home
A medical home was defined as "a
primary care provider who understands the regular and special needs of
your child, coordinates medical care, answers questions, gives information,
connects the family to community resources, and knows the family well."
194 respondents (58 %) said that they had a "medical home", and 128 said
that they did not have a medical home, 13 were equivocal. However, in the
three Focus Groups where there was an opportunity to define and discuss
in more detail the concept of a medical home only 16 (17 %) of 93 parents
said they had a medical home.
"We had fifteen doctors, but not a ‘home’."
The questionnaire asked "Is there
someone else (besides Primary Care Physician) from whom you receive the
information, coordination, and support you need? 197 people responded to
this question. Besides listing individual names, 42 agencies or organizations
were listed. Most frequently mentioned were: CSHN, Community Mental Health
Centers, Schools, Hospitals, Parent to Parent, Home Health, parents/friends/relatives,
EEE, and Family,Infant, and Toddler Program.
Family, Infant and Toddler Project: Early
Intervention
Besides Parent to Parent and CSHN
being frequently identified as being helpful models of family centered
agencies, the program most often praised by parents was the Family, Infant,
and Toddler Program. Parents wished that the program could be duplicated
for older children. They praised the availability, the in-home visits,
the supportive workers, the practical assistance, and the case management
functions. (An exception was the Brattleboro group in which FITP received
critical comments).
Education Issues
The topic that parents most wanted
to talk about at the Focus Groups was their dissatisfaction with the school
system. This needs to be seen in context – to keep in mind that when asked
"Is there someone else (besides primary care physician) from whom you receive
information/coordination/ support" school was the third most frequently
mentioned source. Many families expressed gratitude and satisfaction with
these services, but a majority felt these services lacked knowledge about
children with special needs, and were not supportive, family centered and
inclusive. In the 200 questionnaires in which the qualitative questions
were coded 56% of responses to open ended questions described experiences
with schools in a negative light. These comments were echoed in the Focus
Groups and in other coded questions.
"School had poor staffing, unable
to accommodate our child and unwilling to try very much." "Dealing with
the school system is sometimes a real nightmare."
The depth of the
frustration many families were experiencing in their contacts with the
school system cannot be ignored. Parents repeatedly requested that Parent
to Parent utilize consumers to train educators, in the manner of their
medical resident training program at UVM.
Mental Health Issues
This survey revealed some differences
between families that had children whose primary diagnosis was a mental
health issue and those experiencing physical disabilities. Those with mental
illness were more concerned about crises, and felt more ‘blame and shame"
from providers. However, there was a generally expressed need for the system
to be more responsive to the emotional needs of children with any disability.
Coping with a disability and with society’s response to someone with a
disability inevitably causes emotional stress. Parents emphasized the need
for people to be trained in both counseling/psychology and medical issues.
This survey should be seen as a
‘work in progress". It has yielded rich information that could benefit
from further analysis. Hopefully, further funding will be acquired to do
this work that should prove helpful to all agencies providing service to
families with children with special needs. Hopefully, future investigations
would also survey youth with special needs and their siblings. Their voices
need to be heard to have an accurate picture of how services can best meet
families’ needs and utilize their strengths.
Deep appreciation is expressed to all the family members who participated in this survey – the 402 people who returned questionnaires and the 173 who attended groups.
In particular, Sue Bassett, Michelle Morton and Karen Stenson gave of their time to help with the Focus Groups. Dr. Carol Hassler, director of CSHN and Nancy DiVenere, director of Parent to Parent of Vermont, along with their staffs, and the Parent to Parent Evaluation Committee chaired by Lynn Reynolds, had the vision to pursue this study. Paula Duncan and David Baker of the Agency of Human Services gave their total support to this venture. Appreciation is also due to the special educators throughout the state, Federation of Families for Children’s Mental Health, Downs Syndrome Network, Vermont Parent Information Center, and Vermont Epilepsy Foundation for distributing questionnaires.
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For a FULL report of this survey please contact Donna Filipek, CSHN
863-7338 (or 1-800-660-4427, and, if a touchtone phone, follow
instructions; Donna’s extension is 1320. Or email: dfilipe@vdh.state.vt.us