Families, Mental Health, Intervention and Prevention

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Families, Mental Health, Intervention and
Prevention

• A Systems Approach

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The old gray mare aint what she used to be

• Improvements in neonatal medicine
• Improvements in technology to treat
• Greater awareness of symptoms and syndromes
• Chemotherapy cures and remission
• Psychopharmacology for maintenance

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Social change is losing the race with clinical
progress in treatment

• Unemployment
• Poverty
• Family is permanent caregiver
• Higher risk for attitudinal barriers, physical
  barriers or neglect and abuse

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Focus on Systems

• Family must be understood when thinking about
  childhood disability
• Old view child had problem, maybe focus on
  mother too
• Old view neglected the rest of the family
• Psychoanalytic theory was influential but
  interpersonal focus is now view
• micro to macro view

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Brief overview of family systems

• Membership characteristics and configurations
• Can change over time
• Can reflect many blends of backgrounds
• Cultural style
• SES
• Ethnicity
• Race
• Religion
• Ideological style
• Based on history
• Values and coping behaviors
• Influenced by culture
• Changes in response to family situation and
  experience

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Family Subsystems

• Spousal
• Chronic conflict reverberates
• Scapegoating and alliances
• Models coping styles and negotiation methods
• Childhood disability strongly influences
• Parental
• Interactions between parents and kids
• Models dealing with authority, decision making,
  self-direction
• May be difficult if remarriage or blending of
  families
• Siblings

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Family Functions

• Economic
• Daily care/health care
• Recreation
• Socialization
• Self-identity
• Affection
• Educational/vocational
• Spiritual

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Family Life Cycle

• Strongly influenced by culture and zeitgeist
• Developmental stages and transitions
• Different with a disabled child
• Seven stages idea
• Couple
• Childbearing
• School age
• Adolescence
• Launching
• Postparental
• aging

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Family Resilience in the face of childhood
disability

• Active efforts to stay together, complete tasks
  and share responsibility
• Balance the special needs of all the kids and the
  rest of the family members too
• Maintain normal routines
• Find meaning in the face of challenges
• Flexibility in rulesetting, rolesetting, having
  expectations
• Proactive in learning about disability and
  support services and groups
• Good relationships with all related professionals
• Good communication skills
• Attribute positive meaning to situation

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STRESS

• Effects of
• Decreases ambition
• Demoralizes
• Saps energy
• Leads to depression
• Withdrawal and isolation
• Especially IF it is CHRONIC and unremitting

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Psychosocial stress with childhood disability or
illness

• Intellectual understanding the dx
• Instrumental- what needs to be done for care and
  treatment (including finances)
• Emotional uncertainty regarding prognosis
  watching suffering disappt.
• Interpersonal marital distress may occur and
  also entire family may be affected
• Existential creating a meaningful framework for
  understanding why

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Becoming a parent of a disabled child

• First, consider one of the most dreaded moments
  you break the news to a family that their child
  has XXX disability
• Why is this such a dreaded moment
• Loss, like a death
• Havent gone through any grieving or stages of
  acceptance yet
• Reaction of parent is related to reaction of
  significant others

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The prenatal period and preparation

• Most parents are unprepared for the birth of a
  disabled baby
• Childbirth classes normal delivery and normal
  baby
• Concerns expressed are usually discounted by
  others
• Go through prenatal period with dread of not
  being normal (most people have been exposed to
  stereotyped images and stigma)

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Professional interactions

• Problem history of interactions with medical
  professional may taint future interactions with
  other helping professionals
• Drs often hide the truth dont want to be direct
  and deliberately avoid telling the facts
  believe they are protecting

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Attachment what effect disability?

• Childs appearance disfigurement
• Negative responsiveness of baby to handling
  (stiff, tense, limp, no response)
• Unpleasant crying
• Atypical activity level
• High threshold for arousal
• No response to communication
• Delayed smiling
• Feeding difficulties
• Medical fragility or life threatening problems
• Medical equipment
• Prolonged hospitalization
• No eye contact
• Delayed or absent vocalization
• Unpleasant behaviors, such as seizures

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Parents ADAPT

• Usually pretty quick
• Supportive interactions really help
• Nurses, parent to parent groups
• May recall others (family, friends) with
  disabilities and not feel so alone
• Positive attention in media
• May adapt better if they know right away
• Hidden from them, medical protection
• Delayed dx, problem not as obvious (relief when
  it is finally identified)
• Accident or trauma cause later in life

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Need for Prognostic Information

• Early intervention has allowed parents to have
  more optimism and feel more in control
• Just giving a dx causes fear about future
• Walk, talk, social abilities, survive,
  independence?
• Most important role as a professional
  information

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Once dx is made, INTERVENTION

• Parents generally not seeking cure
• Shopping around dissatisfaction with treatment,
  not necessarily seeking cure
• Financial and geographic limitations for
  intervention
• If complex dx process, difficult to make sense of
  all of it and understand the therapeutic plan

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Utility of Support Groups

• Friends and family, of course, but they dont
  have same understanding
• Membership in group with others who have similar
  experiences
• Feel more comfortable, let down guard (remember
  mother of autistic girl in our film)
• Learn other coping styles, see others be
  successful, give hope (all the reasons for group
  we already studied)

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Childhood Continuing adaptation

• As child gets toward school age, everyone
  encourages normalization
• Parents are expected to be coping
• An ideology of normalization
• Acceptance of the inevitable
• Partial loss of the taken for granted attitude
  (must learn to take things day to day)
• Redefinition of good and evil (could be worse)
• Discovery of true values (appreciate childs
  progress when you dont take it for granted)
• Positive value of suffering (brings you closer
  together)
• Positive value of differentness (he figures
  things out in his own special way)

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How to judge normalization

• More or less emphasis on the following, depending
  on culture and class
• Employment for one or both parents
• Appropriate educational placement for child
• Access to appropriate medical care
• Adequate housing
• Social relationships with family and friends
• Leisure time
• Freedom of movement in public places
• Sufficient financial resources for basic lifestyle

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Obstacles to normalization

• Family support absent or minimal
• Respite care not available
• Counseling services needed or too
• Practical problems transportation, schooling,
  personal hygiene, sexuality
• Continuing medical needs
• (12 of low income kids in most severe disability
  classes in a NYC school did not have a regular
  physician in Charlotte,NC, 34 had no physician
  and 32 didnt have insurance either)
• Fo the most severely impaired group, likelihood
  of seeing a Dr. is 3.5 times higher if the child
  had insurance coverage
• Obtaining insurance may be difficult or
  insurmountable (some plans will not accept the
  disabled child as a dependent on the policy)
• Special educational needs

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More on special educational needs

• Preschool education may be available varies in
  quality and quantity and location
• E.g. home visits may be needed but still an
  unwelcome intrusion
• Public awareness of the public laws and the idea
  of LRE
• Lack of coordination with medical or health
  issues, and other services and settings a parent
  is usually the coordinator and keeps a set of
  records this is a hard job!

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More stressors on the family

• Behavior/adjustment problems as child is
• in school
• In public
• At home
• Continuing dependence and lack of developmental
  milestones/transitions
• Bureaucratic red tape
• High turnover of helpers
• Lack of sufficient funding for respite care

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Costs

• DIRECT
• Babysitting is the biggest out of pocket expense
• Physician visits and hospitalizations
• Medical equipment and supplies
• Housing or vehicle modification

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Costs

• INDIRECT
• Rejected opportunities for career advancement or
  even having a job to spend more time, or
  transportation for special child
• Moving to a more expensive area for the schools
  (special ed services)

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Catalysts to normalization

• Access to medical care and related services
• Availability of appropriate educational program
• Supportive relatives and friends, support groups
• Access to respite care and day care
• Presence of accepting neighbors
• Adequate quantity and quality of help
• Access to behavior management programs
• Availability of recreational programs
• Access to special equipment if needed
• Presence of friends and social opportunities for
  child
• Adequate and available transportation

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Typology of Adaptation

• 1.Crusadership mode
• Become MORE involved in disability than in
  normalization
• Segregated support groups, and these may be the
  only social life of the family
• Public awareness, legislative activism
• Goal is normalization through changing the
  opportunity structure for their own and other
  peoples children

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Typology of Adaptation

• 2. Resignation (opposite pole of crusader)
• Become resigned to problematic existence
• May have their own problems-
• Mental health or other parental disabilities
• Poverty and lack of services
• Rural area, transportation or availability
• Not able to access referral networks
• Low level of social participation, just may be
  reticent to particpate

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Typology of Adaptation

• 3. Altruism
• the goal is normalization but some people stay
  committed to working with the segregated
  disability group
• Altruists choose to associate with the disabled
  group even though they may have opportunities to
  normalize
• Become leaders and models for new parents or
  parents of young children with newly identified
  dx or problems

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Adolescence

• Time of transition
• Need to adjust to adult implications
• Where will they live
• Vocational issues
• Sexuality issues
• Need for family to continue responsibility
• Continued financial implications (SSI vs.
  inheritance)
• Lack of socialization opportunities outside of
  the family
• Planning for guardianship
• Continuing dependence

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Effects on Siblings

• Usually the focus is on parents
• Sibling bond is longest and most enduring of
  family relationships
• Cyclical bond following their own life cycle
• Intense, long term, cyclical, complex
• Five patterns observed
• Caregiver
• Buddy
• Critical
• Rival
• casual

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Issues

• How much to tell siblings when disabled child is
  born
• How much caregiving expected when a child
• Cant take on adult roles as a child
• Jealousy and anger over attention issues
• May be worried about catching it
• As adult, may want to fix what is wrong with
  partner
• Anxiety and fear when grown about caring for
  disabled sibling
• Feel pressure to be ok and do well
• Survivors guilt
• Gender issues of who is expected to care

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Schools Partnering with Families

• Table 4.1 (p.75 in your DC book)
• Mental health services are wellness programs, not
  just targeted interventions
• Think along the continuum
• Even with special education, the mental health
  needs of many children are not met (think of ED,
  SED,BD label and pullout classroom activities)

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What are the barriers?

• Logistical factors
• Stigma associated with mh problems
• Schools blame parents for problem
• Families feel unwelcome
• Intimidated or powerless feeling families
• Disagreements about goals and responsibilities

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Families need to be engaged in school

• The four As approach
• Approach
• Attitudes
• Atmosphere
• Actions
• (note the first 3 are prerequisites for the
  fourth)
• Table 4.2 (p. 80)

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3 levels of service to families

• Disseminating information
• Probably serves about 80 of population
• Most in line with preventive and wellness focus
• Attending to a unique child/family need
• Perhaps 15 of population
• Supplement to universal efforts, early
  intervention or recently identified issue
• Addressing the familial need for ongoing support
• Probably about 5 of population
• Most expensive, and focus on high need services

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What can school psychologists do?

• Have a role at all 3 levels but
• Primary efforts at universal and selected levels
• Prevention and early intervention role
• Collaborative interagency partnerships
• Not just information, but it must be given within
  a appropriate and engaging climate
• RESOURCE MAPPING

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Resource Mapping

• Starts with a needs assessment of current mental
  health resources available at school and
  community
• Analyze results in order to
• Coordinate existing resources and overlaps
• Develop new school-based resources to fill any
  gaps in services
• Improved organization and tailored services for
  each school and community

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Examples of universal prevention

• Good news contacts
• Weekly newsletters
• Open conferencing hours weekly
• Offering programs at night
• Presence of SP at PTA or back to school nights
• Involve parents in specific preventive programs

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Examples of selected service delivery

• Skills groups for kids who may be at risk for
  problems
• Teacher consultation to help them with at risk or
  mild problematic students
• Training in referral and pre-referral procedures
  so that a problem doesnt go on too long before
  intervention
• Service coordination teams like child study or
  RTI teams
• Workshops on specific topics to engage parents
  who might need them
• The family check up a collaborative effort
  between families and teachers to monitor and
  target mentally unhealthy behaviors

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Effective interactions with families

• Guidelines on p. 92,(DC) Check and Connect
• Opening the door
• Thinking the best of families
• In the parents shoes
• Doing whatever needs to be done
• Treating parents as friends
• Being a resource
• Rogerian principles positive regard, empathy and
  warmth, and add concreteness (what can we do NOW?)

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Recommended reading

• Seligman, M. and Darling, R.B. (2007). Ordinary
  Families, Special ChildrenA Systems Approach to
  Childhood Disability, Guilford Press, New York.