F a i r D e a l i n g ( S h o r t E x c e r p t )
Reading: Family-Centered Practices: An Overview (Charting New Waters: The Proceedings of the SpeciaLinkNational Early Intervention Symposium)
Author: Brynelsen, Dana
Editor: Hope Irwin, Sharon
Publisher: Breton Books Publication Date: 1995 Pages: 23-28
Course: EPSE 348 93Q 2023S1-2 Family-Centred Practice for Children with Special NeedsCourse Code: 93Q Term: 2023S1-2
Department: EPSE
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Plenary A • Dana Brynelsen
Dana Brynelsen taught school before she became involved in the Infant Development Programme of British Columbia, and has been the Provincial Advisor fo r Infant Development Programmes in British Columbia since 1975. She has worked with many communities throughout British Columbia in establishing services to families who have young children with disabilities.Ms. Brynelsen has a severe hearing loss from infancy. She has a particular interest in supporting families in their efforts to raise their children and, in particular, to come to terms with their child’s disability and need to feel valued as a contributing family member.Ms. Brynelsen has been the parent of a child with disabilities, who died in 1990. Her younger daughter, Valentina, entered grade one last September, and keeps her mother very busy.
FAMILY-CENTRED PRACTICES: AN OVERVIEWIntroductionI will share with you today some of my thoughts on the philosophy of family-centred care, how we define It, and describe some challenges we face In putting this philosophy Into practice, getting It onto solid ground In our Infant Development Programs. I would like to start out with a quote from Thoreau: “If I knew for a certainty that a person was coming to my house with the conscious design of doing me good, I would run for my life." I am borrowing that quote from Carl Dunst1 to whom we owe a great deal In terms of our understanding of family-centred care, and to whom I will refer liberally throughout this address. I like that quote for many reasons. It reminds us that we have had human services around for a long time, and for a long time Thoreau, among others, has reminded us that only Individuals themselves can determine what is best for themselves. Not outsiders, no matter how well-intentioned or professionally trained we may be. And that concept is central to family- centred care.
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“Family-centred care" is a new term with new research that describes a philosophy of human service. It Is Important, however, to recognize that old practices In human services may have been family-centred In some aspects. There have always been excellent clinicians or human service workers who worked successfully with families, who empowered families, and truly practiced aspects of family-centred care. It shouldn’t be seen as an entirely new way of Interacting with families or providing services to them. Although it may represent a huge shift In practice for many Individuals and agencies, there are some for whom family-centred care is a much closer reality. I think In particular of those I have met who work in hospices.Our experiences In Canada In working toward a family-centred philosophy In Infant Development Programs began in part with early discussions with Peter Mittler and Cliff Cunningham who were working In the 'seventies at the Hester Adrian Research Centre for the Scientific Study of Mental Retardation at the University of Manchester in England. They looked at parent- professional relationships to determine how
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there could be better collaboration on behalf of children.2 Mlttler looked at how relationships had changed over time. In earlier days, the professional was seen as expert, the parent as passive recipient of services. The ’seventies moved more to what Cliff Cunningham called a transplant model, where the professional “transplanted” skills to the parent. The parent was seen as the agent for child change as a “teacher” or “therapist.” The more recent relationship they encouraged was partnership. So before the term “family-centred” became popular in North America, people in Europe were looking at parent-professional relationships around disability, and ways we could be working more effectively together.3In Canada, most of our services for young children with special needs and their families were developed or Inspired by parents.4-5 Parents have been integral to the development of our services in almost every province in this countiy. This is quite different from the ways in which services developed in the United States. University-affiliated programs were developed in the ’seventies across the States to help encourage research and good practices for children with disabilities. By and large, the driving forces were academic and research-based, and parents were not involved in program development. There are exceptions to that, of course, such as the Turnbulls, and there have been many professionals in early service development who themselves were parents of children with disabilities. Nonetheless, there has been more of a trend in the States toward an expert research model of service than there has been in Canada.Theoretically, therefore, it should be easier for us here to move toward family-centred practice as parents continue to be quite involved in service delivery. I am reminded of one of my favourite Burton Blatt quotes:6 “The disease of professionals is that we believe we are too good for the illnesses and problems of the consumer. The disease of consumers is that they believe that too. Both forget that all of us need someone or something.” The fact that parents are involved in services does not inoculate them from Blatt’s disease analogy. Shifting perspectives for both parents and professionals in Canada is hard work.As I said earlier, there’s nothing new about many aspects of family-centred care. They
represent what we know to be good practice. But I don’t want to make it sound as if it is a simple notion. It is far more complex than we like to believe. One of the foremost researchers in this field is Dr. Carl Dunst. We have been in contact since the early ’eighties. He has taught at two of our Infant Development Summer Institutes at the University of British Columbia. We correspond and I read much of what he publishes.Yet every time I hear Carl speak I learn a huge amount more, and I am humbled by how far we have to go.Over and over, however, I hear people in British Columbia and across this country say, “Oh, we are family-centred.” For most I think it’s fair to say they Just don’t understand the concept. For others, it’s as if they think, if we just bred that term into a mission statement, miracles would happen and practices would change. Further to that, “family-centred care” refers to a philosophy and a process that is ongoing. It’s probably never a place where we will be and certainly not a place from which we can sit comfortably and criticize others because they’re not quite as family-centred as we believe we are. There’s a lot of loose terminology used now, and unfortunately a really loose understanding of what the concept truly means.Now, the term “family-centred care” isn’t just used in Infant Development Programs. Lots of services want to be seen as family-centred, and the concepts around it have evolved from a number of movements, such as the Association for the Care of Children’s Health. The British Columbia Ministry of Social Services has attempted to integrate aspects of this philosophy into new legislation in child protection.Paediatric hospitals are putting family-centred care philosophy into their mission statements. We as a field are not alone in discussing issues relating to family-centred care. There are many groups out there that believe they are on, or are interested in getting on, the family-centred “bandwagon.”
DefinitionsFamily-centred care has been defined slightly differently by each group that examines it. A definition that I particularly like is from the Kennedy Institute on the Family, which defines “family-centred care” as a “collaborative relationship between families and professionals in the continual pursuit of being responsive to the
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priorities and choices of families,”7 and one of the concepts in this definition that I particularly like is the term “continual pursuit,” because it recognizes that it isn’t a product or place at which we eventually arrive, but that it is an ongoing process and we’ll probably never be completely “there.”There are a number of definitions related to family-centred practices, and I’m borrowing these from Carl Dunst.8
OVERHEAD 1
OVERHEAD 2
DEFINITIONS RELATED TO FAMILY-CENTRED PRACTICES• System-centred: Practices exist which were intentionally or
unintentionally designed for the convenience or benefit of service systems and the professionals employed by them.
• Child-centred: Practices exist to provide services to an individual child without consideration of the child within the family unit and the family system.
• Family-focused: Early terminology used during the shift from child-centred practices to family-centred practice.
• Family-centred: The philosophies, principles, and practices that put the family at the heart or centre of services; the family as the driving force, based on the recognition of family strengths and competence.
• Family-directed: Practices are designed to meet individual family needs. Families hire individuals or agencies to provide services when and if needed.
I have added the term “family-directed,” the last one here on this list. Family-directed relates to practices designed to meet individual family needs that enable families to hire individuals or agencies when and if needed. We’re very far from family-directed services at this point. We will probably never want that as an end goal for all interactions, but many family-centred services could well be family-directed services in future. I include this term to remind us that the current paradigm shift to family-centred care should not stop us considering how our field will continue to evolve.
Principles of Family-Centred CareA number of principles underlie the philosophy of family-centred care, and these principles are well-defined in many publications.9 10 This overhead Is taken from an A.C.C.H. publication.11
PRINCIPLES UNDERLYING FAMILY-CENTRED CARE• Infants and toddlers are uniquely dependent on their families
for their survival and nurturance. This dependence necessitates a family-centred approach to early intervention.
• Programs should define “family” in a way that reflects the diversity of family patterns and structures.
• Each family has its own structure, roles, values, beliefs and coping styles. Respect for and acceptance of this diversity is a cornerstone of family-centred early intervention.
• Early intervention systems and strategies must honour the racial, ethnic, cultural and socio-economic diversity of families
• Respect for family autonomy, independence, and decisionmaking means that families must be able to choose the level and nature of early intervention’s involvement in their lives.
• Family/professional collaboration and partnerships are the keys to a family-centred early intervention and to successful implementation of the IFSP process.
• An enabling approach to working with families requires that professionals re-examine their traditional roles and practices and develop new practices when necessary — practices that promote mutual respect and partnerships.
• Early intervention services should be flexible, accessible, and responsive to family-identified needs.
• Early intervention services should be provided according to the normalization principle — that is, families should have access to services provided in as normal a fashion and environment as possible, and that promote the integration of the child and family within the community.
• No one agency or discipline can meet the diverse and complex needs of infants and toddlers with special needs and their families. Therefore, a team approach to planning and implementing the IFSP is necessary.
From: Guidelines and Recommended Practices for theIndividualized Family Service Plan, Second Edition, Associationfor the Care of Children’s Health, Bethesda, MD 20814, 1991.
These principles include the following: that infants are dependent on their families; families are diverse and must be respected; families should determine involvement in services; families and professionals must collaborate; traditional practices must change; normalization principles should guide practice; and teamwork is critical. If you look at different groups that have defined family-centred care, you will generally find some or all of those principles embedded in their list of principles. Each group has come up with their own variations in defining these issues. Dunst12 has analyzed a range of family support principles and has developed methods, strategies and practices to assist professionals in our field in their efforts to translate research into practice. I highly recommend that each of us become familiar with this work, particularly as it relates to the concepts of enabling and empowering families.
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Respecting Family Diversity and Family Responses to DisabilityI would like to speak now specifically about the principle of respect. This relates to the fact that families are diverse and that families must be respected in their diversity. I think this presents a great challenge for staff working in Infant Development Programs in Canada. Most of us are a relatively homogeneous group of white, middle-class women who know little or nothing about the life experiences of many of the families with whom we work. Some of us are not parents ourselves, and fewer still are parents of children with disabilities. We are challenged to respect differences among people about whom we know very little and with whom we believe we have little in common.An increasing number of our families have recently immigrated to this country or have lived here for generations, but have cultural practices that are quite different from ours. Other families live in poverty. We have, unfortunately, a great desil of negative prejudice toward people living in poverty. Many of us, as well, do not have a well- integrated understanding of disability. Although we may know slogans, like “Label Jars, not people," we often share mainstream society’s reactions to disability.If we practice family-centred care, we must believe and practice that all families, no matter how different from our own, want the best for their children; that all families have strengths and resources, and that we must build on those positive views of families to work effectively with them. Just as we have shifted emphasis from deficits to strengths with children with disabilities, so we must now take the same proactive and empowering perspective with families. I would like to talk a bit about culture, poverty and disability, and ways that we should be working on our services to be more respectful of these differences.
CULTUREThere are a number of materials recently developed to support a better understanding of cultural differences, explaining how child rearing, to a large degree, is culture-bound and the responsibility we have to respect and to understand different practices. There are an increasing number of Canadian books, such as Honouring Diversity Within Child Care and Early Education13 and another excellent v m book recently published in Toronto, T26 r̂
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called Honouring Diversity.14 Reading books, however, may only enable us to become more culturally “sensitive” — the task is to become culturally “competent.” Sensitivity is an important beginning, but integrating knowledge into day-to-day practice is hard. We need better skills in understanding racism to develop strategies to deal with it within ourselves and within our personal and professional lives. We also need to encourage many more people from different racial and cultural groups into our field. We need their experience and perspective, and our families need them too.
POVERTYAlthough it’s important for us to know the risks of poverty in child development, and to understand the impact of socioeconomic status on parenting, we must never lose the importance of looking at the individual. It is what parents do, and not their status, that contributes to child development. There are good parents parenting well although they live in very impoverished circumstances. I was on a panel talking about Infant Development Programs not long ago on issues relating to poverty. The public health nurse who was also on the panel shared with us the fact that she had been raised in a tent, and had an excellent childhood.Poverty does, however, present enormous challenges to parenting well. These challenges will be exacerbated by us, and by our “help giving” behaviours unless we examine our attitudes, values, and knowledge base around poverty closely. There are now three million Canadians who are living in poverty, and that number grows daily. When I was growing up in Canada, there were fewer poor families, and most lived in neighbourhoods of mixed income levels. Today, the majority live in “poor” neighbourhoods and schools. We lose as well, because this separation creates prejudices. Prejudices are powerful. There’s a real tendency to blame the victim, particularly if we believe that we have nothing in common. Comments in staffrooms reflect this when we “chat” about families with other professionals. How many of us have, ourselves, said to others, “Oh, she Just watches TV all day,” “How can they smoke when there’s no food in the house?” or “Why don’t they clean up — water’s free and the place is filthy?” (see overhead 3)If we haven’t lived in poverty ourselves, and if we work with families that do, we have to learn about that reality as much as we try to learn about the realities of disability for children.
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Sadly, there’s a lot of experience with poverty In Canada, so It’s not hard to find experts. We can hire a parent on welfare to act as an advisor to our program. We need to hear how hard It Is for someone living In poverty to see us using food like macaroni as a throw-away craft activity. Anti-poverty groups can give in-services to staff. Barter systems can be established to reduce “have” and “have not” Inequities. Just as more materials Eire being developed to promote understanding across ethnic and cultural diversities, so too are there a number of Canadian resources dealing with poverty that we must access.
DISABILITYAnother area In which diversity needs to be respected is In Issues relating to disability. As one parent said about early Intervention services, “Children have developmental timetables, and families have timetables too.” We must respect those timetables which are as individual for families as they are for children. Ann Turn- bull said about early intervention staff, “You come into a family as If you’re In a 100-yard dash, but we are entered in a marathon.”15 Our expectations that families adjust and get on with It In order to help the child, or our need to minimize the pain associated with coming to terms with a child’s disability because we can’t take away the pain are issues we must address. Ann Osier tells us to reframe our negative Judgments around parental reaction to diagnosis
OVERHEAD 3
of disability In children. She says, “Guilt Implies a comforting measure of control over a situation with no rational explanation. Anger defends against blame. Emotional detachment numbs the fear of loss. Denial gives us time to learn new ways of coping and the energy and humour to fight the facts In ways that generate new services and better futures for our children.”16Respecting persons with disabilities for who they are is another challenge. We must move from a clinical perspective of looking at disabilities as associated pathologies to providing families with information about, and inspiration from, people with disabilities who are living well in every Canadian community. Xeroxed pages from Smith’s Recognizable Patterns o f Human Malformation do not inspire or raise expectations. Indeed, they usually do the opposite. Parents need disabled adult role models; children need to see disabled peers. We must rethink inclusion to ensure that friendships between disabled and non-disabled persons can flourish. We did not respect persons with disabilities when we did not permit them to integrate into the broader community. There is little difference when we do not permit persons with disabilities access to disabled peers.
YardsticksResearch in a number of fields has described practices and strategies we can use to become more family-centred. The field is now starting to develop tools with which we can measure our
PARENTING IN POVERTY
How does poverty affect Canadian families? While some experiences will be unique for each family, many issues will be similar. Togain some understanding, we can learn from Linda Marchotte’srecollections.
Here are some of my memories of mothering in poverty:• The kids always having stained, patched, or out-of-fashion
clothes.• Sending them to school with plain, unexciting lunches every
day.• No hotdog or donut treats at school fundraising day.• No cable TV — actually, no TV for five years. I put it away so
they wouldn’t want what I couldn't buy them.• No movies.• Arriving places tired from carrying stuff, and worn out from
waiting in the cold or wet or hot (depending on the weather), rumpled, dirtier from riding the bus than getting around by cab.
• Shame in inviting kids over. “Where’s the couch?” "Where’s your stereo?” “Where’s your room?” were the kinds of questions from these young visitors.
• Birthday parties: kids asking, “Is this all there is?”• Saying NO to Steven and Melanie all the time.• Me worrying and anxious about money. 'Will we make it to
cheque day?” Me being scared anything will happen that costs anything. This fear taking energy away from living, having fun, and paying attention to the children.
• Dragging the kids and two garbage bags full of dirty laundry on the bus every week to do laundry.
• Always looking for money or returnable bottles on the ground.• Me escaping into reading or watching TV.• Being constantly worried they weren’t getting enough nutritious
food to grow and be healthy.• Being homeless for four months and living with friends and at
two different friends’ houses while they were away, with our things stored on another friend's back porch.
• Being aware of how out of their peers' culture and experience my children were, but powerless to do anything about it.
From: A child is not a toy: Voices of children in poverty, by Sheila Baxter. New Star Press, Vancouver, 1993.
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progress toward family-centred care leading to specific changes in practices. The Family- centred Program Rating Scale17 developed by Murphy, Lee, and Turnbull, is an example of an Instrument for the evaluation of program change. It looks at a number of items, including flexibility and innovative programming, individualizing services, providing appropriate and practical Information, and building expectations that they are making a positive difference in their child’s life.
TrainingAs we move toward family-centred care, we have principles. We have examples of good practice, and we have tools that can help us measure our progress. I think it’s very important now for staff who are working in Infant Development Programmes to train together to bring about needed reform. All levels of our organizations need to buy in. We must all have a fair knowledge of the value base around family-centred care from the family level and all the way down to the president of the board. We need to recognize resistance in others, and in ourselves.When I first started this talk, I made reference to those of us who think we are already family- centred. Well, I think we have to recognize that attitude as resistance to change, and we have to recognize that there is often quite a gap between
what we are doing and what we think we are doing. We have to accept that it is going to take time, and it requires ongoing development and support. If we wish successful and ongoing progress toward family-centred practice, staff must be empowered. Just as we believe that family-centred practice empowers families, we must empower staff working with them. Staff that are working with families should be viewed as independent and confident problem-solvers quite capable of identifying their own training needs and monitoring their own performances.I cannot think of a field with more capable and
competent staff.
ConclusionEvery day, hundreds of you walk into the homes of thousands of families across this country. No cookbooks, no blueprints, and each family unique with unique values, strengths, and resources. And each of you doing the best you can with the values, strengths, and resources you bring to them. Families value your support highly. Survey after survey tells us that. I believe you are valued so highly because you have been “on the road" to family-centred care one way or another for quite a while. Our challenge is to recognize the distance we have yet to go in our Infant programs, and develop ways to support others who are new to the concept.
References' Dunst, C. University of British Columbia Summer Infant Development Institute, July 1993* Mitler, P. and McConachie, H. (Eds.). (1984). Parents, Professionals and Mentally Handicapped People — Approaches to Partnership.
Brookline Books.3 Brynelsen, D. (Ed.). (1984). Working Together — A Handbook for Parents and Professionals. British Columbia: National Institute on Mental
Retardation and British Columbians for Mentally Handicapped People.4 Brynelsen, D., Cummings, H., and Gonzales, V. (1993). Infant development programs. In Ferguson, R., Pence, A. and Denholm, C. (Eds.).
Professional Child and Youth Care. Second Edition. British Columbia: U.B.C. Press.5 Marfo, K. (Ed.) (1991). Early intervention in transition: current perspectives on programs for handicapped children, in Marfo., K. (Ed.). The
Evolution and Current Status of Early Intervention in Canada. New York: Something Publishers.* Blatt, B. (1981). Keynote address, A.A.M.D. Family Conference, Vancouver, BC.7 Edelman, L. (1991). Recognizing Family-Centred Care: A Group Exercise-Facilitator's Guide. Baltimore, MD: Project Copernicus, The
Kennedy Institute.* Dunst, C., Trivette, C., and Deal, A. (Eds.) (1994). Supporting and Strengthening Families, Volume f: Methods, Strategies and Practices.
Brookline Books.* McGonigel, M., Kaufman, R., Johnson, B. (Eds.) (1991) Guidelines and Recommended Practices for the Individualized Family Service
Plan, Second Edition. Association for the Care of Children’s Health.10 Singer, G.H.S. and Powers, L.E. (Eds.) (1993). Families, Disability and Empowerment. Baltimore: Paul H. Brookes." Ibid., Guidelines and Recommended Practices for the Individualized Family Service Plan.’7 Dunst, C., Trivette, C., and Deal,*A. (1988). Enabling and Empowering Families — Principles and Guidelines for Practice. Brookline Books.13 Chud, G. and Fahlman, R. Honouring Diversity Within Child Care and Early Education — An Instructor’s Guide, Volume 1. Burnaby, BC:
Open Learning Agency.14 Greey, M. (1994). Honouring Diversity: A Cross-Cultural Approach to Infant Development for Babies with Special Needs. Toronto, Ontario:
Centennial Infant and Child Care Centre.5 Turnbull, A. (1882). Keynote speech at HCEEP/DEC Conference. Washington, D.C.
" Oster, A. (1984). In Equals in Partnership: Parents of Disabled and At-Risk Infants and Toddlers Speak to Professionals (Conference Proceedings). Washington, DC: National Center for Clinical Infant Programs.
’7 Murphy, D., Lee, I., Turnbull, A. and Turbiville, V. (1995). The family-centred program rating scale: an instrument for programevaluation and change. In Journal of Early Inter- >^¡1 vention, 19(1), Winter 1995.
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