Family-Centered%20Practices%20for%20Young%20Children%20with%20Visual%20Impairment

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Family-Centered Practices for Young Children with
Visual Impairment
Deborah D. Hatton, Ph.D. July 5, 2007 Toronto,
Ontario Best Start Ontario Ministry of Children
and Youth Services
The University of North Carolina at Chapel Hill
Early Intervention Training Center for Infants
and Toddlers With Visual Impairments FPG Child
Development Institute Produced in collaboration
with R. A. McWilliam and P.J. Winton (2002)
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Objectives

• After completing this session, participants will
• 1. describe and implement strategies that can be
  used to build reliable alliances with families
  and other professionals and to implement
  family-centered practices.
• 2. describe and implement strategies to
  effectively communicate and collaborate with
  families and other professionals.
• 3. describe the three types of support that are
  important for families of young children with
  visual impairments and explain the advantages of
  developing an ecomap (a graphic representation of
  a familys existing supports).

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Objectives

• After completing this session, participants will
• identify three key child outcomes and five key
  family outcomes that should be considered when
  providing intervention to young children with
  visual impairments and their families.
• complete an ecomap to identify key features of
  the family ecology that might influence
  intervention/education.

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Objectives

• After completing this session, participants will
• complete a routines based assessment to identify
  family concerns, priorities, and resources that
  describe the strategies that members of teams use
  to effectively communicate and collaborate with
  families and other professionals.
• identify functional outcomes for intervention
  that are tied to sensory assessments, ecomaps,
  and routines based assessment.
• describe and implement strategies for successful
  home visits and consultative visits to child care
  settings.

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Family-Centered Support

• reflects a method of coordinating and
• delivering assistance, support, and services
• to the families of children with disabilities
  that
• enhances their capacity to care for
• their children.
• is based upon an understanding of the
• complexity that exists within families and that
• decisions and services will influence each
• member of the family and the unit as a whole.

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Central Values of Family-Centered Approach

• Emphasizing families strengths rather than
  deficits
• Promoting family choice and control over desired
  resources
• Developing collaborative relationships
  between professionals and parents
• Viewing family from a holistic perspective

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Establishing Reliable Alliances

• The term reliable alliance has been used
• by Turnbull and Turnbull (2001) to
• describe a dynamic relationship between
• families and professionals in which they
• experience individual and collective
• empowerment by sharing their resources
• to make joint decisions.
• Turnbull Turnbull, 2001

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Eight Obligations Involved in Establishing
Reliable Alliances

• Reliable alliances involve the following eight
• obligations (Turnbull Turnbull, 2001, p. 58)
• Knowing yourself
• Knowing families
• Honoring diversity
• Affirming and building on family strengths
• Promoting family choices
• Affirming appropriate choices
• Communicating positively
• Warranting trust and respect

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Responses to Grief

• Early models of the grieving process included
  sequential stages of shock, denial, anger,
  depression, and acceptance.
• Today a broader understanding of responses to
  grief exists. Individuals may sporadically,
  randomly, or predictably experience sadness,
  guilt, regret, longing, disbelief, fear,
  irritability, hopelessness, and powerlessness.

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Diversity

• Diversity refers to differences in individuals
  and families
• across a variety of dimensions, including
• culture, language, race, class, disability, age,
  and gender.
• personal affiliations to religious and political
  groups or beliefs.
• sexual orientation.
• Family culture can affect
• treatment of medical issues.
• primary language spoken within the home.
• literacy activities.
• interactive play (social skills).
• daily routines.
• Milian Erin, 2001

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Consider Variations Within Cultures

• Families vary in their adherence to cultural
• norms based on
• primary language in home and community.
• educational level.
• religious affiliation.
• country of origin, length of time in U.S.,
• degree of acculturation, or current residence.
• income.
• 
  Santos
  Reese, 1999

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Cultural Diversity and Visual Impairment

• Some cultures
• believe that caring for the child is more
  important than teaching independence.
• expect adults with blindness/VI to hold only
  certain jobs or not work at all.
• value oral communication over the written word.
• vary in their gender expectations.
• ascribe special meaning to particular types of
  visual impairment.
• Erin, 2002

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Religious Diversity and Visual Impairment

• Some individuals may think that having a visual
  impairment is retribution for sin.
• For some families, a religious leader or
• the head of the family may be the critical
• decision maker.
• Some families visit religious healers during
• their childs early years.
• 
  
  Erin, 2002

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Importance of Collaborating with Families

• Almost all child-level intervention occurs
  between home visit sessions.
• Almost all interventions can be implemented in
  the context of family routines and daily
  activities.
• Infants and toddlers cannot generalize skills
  that early interventionists model from one visit
  to the next.

Early Intervention Training Center for Infants
and Toddlers With Visual Impairments FPG Child
Development Institute University of North
Carolina at Chapel Hill R.A. McWilliam August
2004
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Components of Collaboration

• Empowering caregivers to meet childrens needs
• Treating caregivers with respect and as full
  members of the team
• Conferring with specialists and other service
  providers to develop and implement an integrated
  and comprehensive intervention plan that can be
  used across settings in daily routines and
  activities

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Coordinating Services for Young Children with
Visual Impairment

1. Coordinating performance of evaluations and
   assessments
2. Facilitating and participating in development,
   review, and evaluation of intervention plans
3. Assisting families in identifying available
   service providers
4. Coordinating and monitoring delivery of available
   services

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Coordinating Services for Young Children with
Visual Impairment

• Informing families of availability of advocacy
  services
• Coordinating with medical and health providers
• Facilitating development of a transition plan to
  other programs, if appropriate

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Four Collaborative Roles for TVIs

• Supportive - demonstrating concern and caring for
  others during new and difficult situations
• Facilitative - assisting the professional
  development of other team members
• Informative - providing information and support
  to other team members
• Prescriptive - suggesting strategies or
  resources in response to a request for
  assistance
• Topor, Holbrook, Koenig, 2000

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Support-Based Intervention

• An overarching feature of early intervention is
• the provision of supports, rather than the
• provision of services.
• McWilliam and Scott (2001) identified three
• primary types of support provided by early
• interventionists
• Emotional support
• Informational support
• Material support

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Emotional Support

• Emotionally supportive, family-centered
  practitioners have the following characteristics
• Positiveness
• Responsiveness
• Orientation to the whole family
• Friendliness
• Sensitivity
• Competence with and about children
• Competence with and about communities
• 
  McWilliam, Tocci,
  Harbin, 1998

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Material Support

• Families cannot carry out interventions if their
  needs for food, shelter, and security are not
  met.
• Children with VI may require specialized
  materials, such as low-vision devices, to enhance
  participation in daily routines.
• Examples of Material Support
• Equipment and supplies
• Information about resources,
• including financial resources

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Informational Support

• Families with children with visual impairments
• may report concerns about the future and
• express a need for information about
• child development,
• the childs visual condition,
• services and resources, and
• specific strategies and skills.
• Leyser Heinze, 2001

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Child and Family Outcomes
http//www.fpg.unc.edu/ECO/
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Child Outcomes

• Overall goal is to enable children to be active
• and successful participants in their early
• childhood years and in the future.
• Three outcomes that reflect achievement of this
• goal are
• Children have positive social relationships.
• Children acquire and use knowledge and skills.
• Children take appropriate action to meet their
  needs.
• ECO Center, 2005

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Family Outcomes

• Families understand their childrens strengths,
  abilities, and special needs.
• Families know their rights and advocate
  effectively.
• Families help their children develop and learn.
• Families have support systems.
• Families access desired services, programs, and
  activities in their communities.
• ECO Center, 2005

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Responsibilities of Professionals who Provide
Specialized Services for Young Children with VI

• Functional sensory assessments
• Adaptations/accommodations to assure
  accessibility
• Functional and meaningful intervention that is
  tied to assessment results, family priorities,
  and standards and that can be continuously
  monitored

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Collaboration Between Professionals and Families

• Families provide essential information about the
  assessment of their children.
• Families who are involved in assessment are more
  likely to understand the process and the results.
• Respect for family values, cultures, and
  priorities is essential in planning and
  implementing assessments and intervention.
• Smith Levack, 1996
• Hatton, McWilliam, Winton, 2004

PowerPoint 7
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Family Ecology

• Family ecology refers to the system of informal
• supports available to the family that are
• depicted graphically by an ecomap.
• An ecomap is used to
• identify existing supports, how duplication of
  efforts might be avoided, and possible gaps that
  need to be addressed, and
• assist in identifying resources that will be
  required to achieve functional outcomes.

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Routines-Based Assessment

• The RBA is a process whereby families
• share their concerns.
• identify priorities for early intervention
• within the context of everyday activities
• and routines, thereby assuring that
• early intervention occurs within natural
• environments.

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Benefits of the RBA

• The routines-based assessment
• emphasizes that intervention is family-centered.
• provides a structure for families to have a
• meaningful role in planning.
• generates a list of functional intervention
  outcomes.
• aids in developing a positive relationship with
  the family.

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Role of the Professional Providing Specialized
Services for Children with Visual Impairment

• Organize an RBA and conduct the
• interview, if this hasn't already been
• done
• Participate but not be the primary
• interviewer
• Train other team members to do RBAs
• Receive the information after the fact

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Components of Individual Child and Family Service
Plans

1. Statement of current levels of functioning
2. Statement of the familys resources, priorities,
   and concerns
3. Statement of the long term and short term goals,
   criteria, procedures, and timelines
4. Statement of early intervention services,
   including the frequency, intensity, and method of
   delivering services

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Components of Individual Child and Family
Service Plans

• Statement of the natural environments in which
  services will be provided
• Statement of the projected dates for the
  initiation and duration of services
• Identification of the service coordinator
• Description of the plan for transition to
  preschool services

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Key Components of Intervention Plans

• Familys strengths, concerns, and priorities as
  derived from the RBA
• Childs current level of functioning, as
  determined by sensory assessments, routines based
  assessment, and transdisciplinary assessment of
  child

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Linking Assessment to Outcomes and Services

• Services on the intervention plan should be
  related to needs identified during child and
  family assessment.
• The team should decide on services based upon
• outcomesnot upon the diagnosis.
• Children may have the same diagnosis, but their
• unique strengths and needs may prompt
  different
• outcomes, based on priorities of the family
  and team.

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Developing Intervention Plans Should be a Team
Effort

• Families are integral members of all teams.
• The team agrees upon functional outcomes
• and the strategies needed to achieve them.
• The team identifies the services and service
• providers that can provide the support needed
• to achieve the functional outcomes and to
• implement strategies.
• The team determines the timelines for
• achieving the outcomes.
• The team identifies the primary home visitor
• (and possibly the service coordinator).

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Functional Outcomes

• For very young children,
• functionality means
• having meaningful social
• relationships
• acquiring and using knowledge and
• skills (engagement),
• taking appropriate action to meet their needs
  (independence)

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Social Relationships
Social relationships provide motivation and serve
as the foundation for learning and competence.

• Social development involves
• forming relationships
• (attachment),
• communicating,
• interacting appropriately,
• adapting to new situations,
• social interactions (parallel,
• associative, cooperative play), and
• forming friendships.

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Engagement

• Engagement refers
• to the childs
• developmentally and
• contextually appropriate
• interactions with the
• environment.
• To maintain
• appropriate engagement, children must
  continuously acquire and use knowledge and skills.

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Independence
Independence refers to childrens ability to
function with as little assistance from others as
possible and requires children to take
appropriate actions to meet their needs.

• Independence in
• communicating
• moving
• solving problems
• routines
• playing
• getting along with others
• looking after oneself
• Independence promotes confidence and self-esteem.

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Natural Environments and Children with Visual
Impairment

• Although provision of services within a childs
  natural
• environments is the goal, children with
  visual impairment and their families may also
  benefit from specialized environments because
• children with visual impairment have unique
• developmental needs (AER AFB, 2003).
• the presence of visual impairment can prevent an
  
• infant or toddler from accessing the same
  visual
• information available to sighted peers
  therefore the
• environment may need to be adapted in order
  to
• meet specific needs (Chen, 1999).

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Support for Transitions

• Identify the possible future settings
• Identify the skills of all people involved in the
  
• transition
• Provide the primary interventionist in the new
• setting with information about the child
• Key personnel who worked with the child
• before the transition should maintain contact
  
• with the new professionals

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Major Goal of Home Visits

• Provide support that promotes functional
  outcomes for family and child. Support can be
• informational,
• material, or
• emotional.

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Recommended Practicefor Home Visits

• Collaborate with families and with other
  specialists and service providers.
• Use routines-based intervention to achieve
  functional outcomes.
• Assure that a team approach with close
  collaboration is used to support families and
  children.

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Role of Specialists in VI

• Primary Home Visitor
• Responsible for regular weekly home visits
• Responsible for securing information from
  specialists and incorporating into integrated
  strategies for functional outcomes
• Responsible for intervention plan development,
  implementation, monitoring
• Responsible for transition planning

• Consultant
• Identifies priorities from primary home visitor
  while formulating recommendations related
• to visual impairment
• Makes joint visits with primary home visitor
• Provides technical assistance to primary
• home visitor and direct service to child and
  family through joint home visits

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Additional Resources

• For hundreds of resources on family-centered
• practices for young children with visual
• impairment, go to
• http//www.fpg.unc.edu/edin/Resources/modules/in
  dex.cfm
• or see Resources section of the website for the
• Early Intervention Training Center for Infants
• and Toddlers with Visual Impairments at
• www.fpg.unc.edu/edin