Skill building to identify and support the individualized needs of

families.

Presenters

• Pat Grosz, RN, Ph.D.

PFP: (813) 321-3320

• Diane Koch, Ph.D.

PFP: (813) 399-1625

• Leslie Pokres, BA

Children’s Board: (813) 204-1735

Meeting the Needs of Parents

• There’s very little data collected about families with intellectual disability in U.S. child welfare systems.

• Depending on the State, 40-60% of children of parents with intellectual disabilities are removed from their homes (Callow, 2009).

• One important State study matched education system data regarding “special education” status with data regarding termination of parental rights (Singh, et.al. 2012)

• Conclusion – Parents with cognitive disabilities are more likely to be involved in the child welfare system and to experience termination of parental rights than parents who do not have a disability.

Who Are Parents with Intellectual/Developmental Disability?

• I/DD –significant limitations in intellectual and adaptive functioning

• May or may not be eligible for services

• May not have skills to develop relationships that provide natural support (as do parents without disabilities)

• Funded programs are scarce

• Case example (Mixing infant formula)

Concerns and Biases

• Closely scrutinized for signs of neglect/abuse

• Fear children will be removed

• Hide or mask disability

• Deprive of accommodations or opportunities

• Parenting classes and counseling not cognitively adapted

BARRIERS to Meeting the Needs of Cognitively /Intellectually Challenged

Parents

• Lack of social support

• Poverty

• Lack of housing

• Mental health disorders

• Difficulty navigating the system

• Cloak of Competence

• Societal attitudes

Historical Perspective

• Before Deinstitutionalization Movement of 60’s people with intellectual disabilities were removed from the community

• Returned to community without skills/supports needed to cope with demands of community

• People with disabilities can make good parents, provided right supports for challenges

Identification and Definition

• Intellectual Disability ( Extremely Low I.Q.< 69) plus significant limits in skills needed to live and work in a community (communication, self-care, social skills, safety, self-direction)= 2.2 percent of population

• Borderline/Very Low I.Q. 70-79 (problems with learning, reasoning, abstract thinking, judgement) =6.7 percent of population

Identification and Definition

• I.Q. 71-84 (Very Low to Low Average) range not by itself a disability but in combination with other mental or physical impairments can qualify under Social Security Act

• Approximately 15 percent of population

• Parents with Learning Difficulties is a large and heterogeneous group

Discrimination and Stigma

• Perceptions that parents with learning difficulties can’t make good parents

• Research focus on the negative (higher rates of neglect and abuse) not positive

• I.Q. doesn’t determine a parent’s ability to raise children

• It is a question of adaptation!

Common Factors in Adaptation

• What makes it hard to live in a community and what affects a person’s ability to parent??

• Poverty-unemployment, poor housing

• Stress

• Health issues

• Lack of natural supports SOCIAL ISOLATION

• Lack of formal supports

Evidence Base

• No uniform impact of I/DD Field & Sanchez (1999) I/DD alone not predictive of parenting ability

• Each must be assessed individually

• (ASSESS DON’T ASSUME)

• Booth & Booth (1997) interviewed adults parented by parent with ID. Experiences similar to others of same SES and neighborhood. Valued relationship with parent.

• Perkins et al (2002) secure attachment associated with warm caregiving style

Factors of Successful Parenting

• Grayson (2000)

• I.Q.> 50

• Married or living with daily support of high functioning adult

• Fewer children or only one

• Motivation/Willingness to accept support

• Training in home for generalization

• Models during own childhood

• Good physical and mental health

• Adequate finances

• Low stress

Revised Definition

• “intellectual disability refers to the need for specific training or skills that most people acquire incidentally and that enable individuals to live in the community without supervision” (Dever, 1990 cited in Mildon et al 2003)

Identification

Why is Identification Important for Social Service Workers?

• Importance: “safety”, “permanence”, “well-being of children”

• Difficulties with Identification: “street smart”, “stigma with diagnosis”, “reluctance of involvement with child welfare”

Perception of The Public

• People in the general population have somewhat different conceptions of intelligence than do most experts. Laypersons and the popular press tend to emphasize cleverness, common sense, practical problem solving ability, verbal ability, and interest in learning. In addition, many people think social competence is an important component of intelligence

Understanding Culture based on Intelligence

• If you belonged to a culture whose way of life to survive is fishing. The knowledge, skills and ability of the person to fish is extremely important and defines the individual. If a person had difficulty fishing they would be shunned by others in their culture and seen as not being smart.

• What are some of our cultural values?

Parents who have a cognitive disability are concerned about

their child also having a disability.

(video)

Impact of Diagnosis & How Determined

• IQ scores are used as predictors of educational achievement, special needs, job performance and income.

• Parents prefer to be considered “irresponsible” rather than “retarded”

• Diagnosis by Psychologist/educator

• Parents fear child welfare and control over their lives and children.

Characteristics in Parents

• Not always obvious as the disability is “hidden”.

• May appear “non-compliant” as cannot keep track of appointments and may be overwhelmed.

• May appear unmotivated.

• May not provide developmentally appropriate activities for the children.

• May have trouble with employment.

Over Representation in Child Protection System

• Living conditions appear chaotic; poverty and unemployment are prevalent

• Prejudicial beliefs, perceptions, expectations of community and service providers

• Gaps in services

Issues That Parents Face

• What issues do your parents face?

• What are the gaps for services for our families?

Different Learning Styles

What is your learning style?

•What tools do you use to remember things?

•Why is this important for the practitioner who is working with parents with cognitive limitations?

Your Creativity at Work

Working with parents with cognitive limitations requires skills in mediating based on their learning styles:

• Assessing what works best

• Visual, Auditory, Tactile, Kinesthetic, Smelling

Service Approaches

Home Visiting –model and teach, supports for nutrition, care of home, safety, where parent will use skills.

Parenting Groups-topics of discipline, child development, decision-making

Center-Based Programs-provide joint parent-child and separate at same site (meal preparation, financial management)

Shared Parenting Models- full time support when parent and child live in foster care together. Foster parent acts as “co-parent” to ensure needs of child are met

Principals for Effective Services for Parents with I/DD

-Services need to be responsive to individual needs and focus on whole family to meet needs of parents and children-Services need to be Long-term ongoing supports because needs change and skills needed change-Services need to consider learning needs of parent (in home, repetitive, use demonstration, resources with little reading required-Must assist parents in becoming part of their community (McConnell, Llewellyn and Bye (1997)-

Training Techniques

• Modeling tasks/behaviors that are desired

• Repetition of task

• Using color coding to help with training

• Breaking down tasks into small steps and helping to prioritize tasks that need to be accomplished

• Use of cue cards/pictures of tasks

• Use of natural supports

What comes to mind when….

• You think about cleaning your refrigerator?

• What do you first think about?

– Supplies

– End result

– Preparation of task

– Do you have the time to start and complete the task in mind

– Other thoughts

Kinds of Supports?

• In-home to teach skills and assess competency

• Parent training adapted for I/DD (level of literacy)

• Help with shopping and money management

• Service coordination

• Health care, navigating systems

• Child care and Early Intervention

• Mental Health/Addiction Counseling/Crisis Intervention

• Basic Education

• Transportation

• Play Groups

Assessing the Need for Evaluation

Screening for Possible Parental Cognitive Limitations:

Wake County Human Services Questionnaire

(Handout and Discussion)

Professional Responsibility

I am responsible to :• Identify what individualized supports are needed

through what mechanisms? (family eco system)• Identify natural supports available to the individual

through what processes?• Make sure supports and resources are available to the

individual and they know how to access them and you are available to assist them.

• Breakdown tasks so that the individual does not become overwhelmed. Help them prioritize and focus on completing one task before introducing another one.

Early Childhood

Intervention Program

Neighbors

Extended

Family

Mother’s

Employer

Personal

Friends

Father’s

Employer

Siblings

Child

Care

Center

Parent

Support

Group

Health

Services

Laws

Values/

Beliefs

Customs/

CultureCHILD

Ecological

Mapping

of the Child and

Family

Embedded

Within Other

Social Systems

According to

the Theory

of Urie

Bronfenbrenner

Religious

Affiliations

Mother/

Step-

Mother

Father/

Step-Father

Other

Directly

Involved

Family

Supporting Parent-Child Relationships through a Circle of Relationships

OrganizationalSupport & Resources for

Relationship-Based Practices

SupportiveRelationships

Family-Community

Relationships

Parent-Parent

Relationships

Practitioner-Parent

Relationships

Practitioner-Child

Relationships

Practitioner-Practitioner

Relationships

Supervisor-Practitioner

Relationships

Parent-ChildRelationships

Family

Family

Relationship-Based Intervention Approach: Edelman, 2004

How Do I Work with A Parent with Cognitive Limitations?

Video

How Do I Work with A Parent with Cognitive Limitations?

• Reflect on your own values and biases.

• Avoid assumptions.

• View parents as experts.

• Emphasize competence rather than problems.

• Work with the parent rather than “on the” parent.

• Emphasize partnership & capacity building.

• Avoid jargon.

• “Talk” rather than “interview”.

• Regard the parent as “who you work for”.

CAREGIVERS PROFESSIONALS

Perspectives

and Choice

Expertise

Mutual Respect

Professional Expertise

Valued

Parent Knowledge

Vital Contribution

Goodman, 1994

Family-Centeredness

EMPOWERMENT

Dyadic & Triadic Relationships

ExperiencesNurturing

Child

ParentsProfessionals

TRUST

(L. Boothby & P. Grosz based on work of A. Turnbull, R. Turnbull, 2002)

Communication Strategies

• Strive for curiosity about the parent.

• Determine how the limitations create challenges.

• Consider the reading materials you may present. (BASIC)

• Use photos, videos, and examples from the parent’s life to explain skills (Mediated learning)

• Role play and practice are IMPORTANT!

Support Strategies

• Collaborative not didactic approach

• Have parent demonstrate

• Give specific feedback

• Multimedia and practice

• Learning in small chunks

• Practical examples

• Specific skills and Knowledge Needs

• Look beyond the disability

• Focus on parent’s growth not only skill acquisition

Practice Reflections

• Does parent understand why CW is involved?

• What systemic disadvantage could be impacting ability to successfully parent?

• What are your assumptions/beliefs?

• Do you presume incompetence?

• What strengths does parent bring?

The Early Intervention Process as Enhancement of FamilyCapacity: A Constellation of Service Delivery Options

Family Capacity Enhancement

Direct Physical Health &

ProtectionTreatments

Developmental Play,Care-giving,Parent-ChildInteractionMethods

Specialized Therapies &

Interventions

Knowledge &Information-based

Strategies

Social &Psychological Supports

(L. Boothby, P. Grosz, K. Marfo, & S.Graven, 2000)

BROADER CONTEXTOF COMMUNITYSUPPORTS & RESOURCES

Remember

• Children want to be loved

• Children want to be with their parent(s)

Video

Next Steps for Us

• Work group – sign up

• Advocacy

• On going training opportunities

• Engage parents to be partners with us in building the capacity of our community

• Navigate systems

Thank You