WORKING WITH FAMILY, CULTURE AND DISABILITY: WORKING WITH FAMILY, CULTURE AND DISABILITY PACER Center • Session 5


Agenda: Agenda Welcome & Introductions Family Involvement & Teens “First Jobs” Family Contributions to Employment Beyond the Nuclear Family Surrogate Parenting Cultural Differences & Disability Perspectives Large Group Exercise: Scenarios Resources Questions & Evaluations


Disability and Family: Disability and Family Depending on individual family, having a relative with a disability may have a positive negative, or neutral effect on family quality of life.


Disability and Family Economics: Disability and Family Economics Extra costs may arise from special diets, transportation, vehicle modification, recreation, adapted clothing, medical care, special services, wheelchairs, architectural modifications, and other needs. Another cost is the reduced opportunity for families to make money because of their child’s disability.


Daily Care: Daily Care In some families, the care needs of the individual with a disability are no different from other family members. However, children with more severe disabilities usually do require more assistance and more supervision of their daily needs.


Slide6: Parents of children with developmental disabilities and chronic medical conditions report: Approximately 50 percent gave their child extensive assistance with grooming, and medical monitoring One-fourth said their child needed 24 hour daily monitoring A little more than half said they had a crisis requiring extraordinary intervention within the last month Research Shows …


Additional Parent Responsibilities: Additional Parent Responsibilities Many parents of children with disabilities take on additional responsibilities: Help teach their children Make sure their children get services Work toward their children’s inclusion into the school and community Facilitate social relationships Create opportunities for recreation


Family Involvement and Teens: Family Involvement and Teens Positive parent involvement increases the likelihood of successful post-school outcomes for youth with disabilities. Family involvement leads to better academic outcomes, reduced school problems, reduced high-risk behaviors, and increased after school involvement for youth with and without disabilities.


Families Prepare Students for Life After High School: Families Prepare Students for Life After High School Foster decision-making & self-determination skills Promote self-knowledge and understanding of: - their disability - their accommodation needs - their strengths Help students set goals Guide students towards skills needed to achieve their goals (e.g.. academic skills needed for post-secondary education) Promote experiences & skills needed for work


First Jobs Exercise: First Jobs Exercise What were your own “first job” experiences? What role did your family play in those experiences?


Family Contributions to Successful Employment Outcomes : Family Contributions to Successful Employment Outcomes Job Assessment/Exploration Finding Employment Job Retention


Job Assessment/Exploration: Job Assessment/Exploration Identify interests and strengths of youth Collaborate in creative problem solving Identify paid and unpaid work experiences Streamline the vocational assessment process


 Finding Employment: Finding Employment Use personal networks to identify job opportunities Support an individual in their job search Improve quality of placement and job satisfaction by helping to identify a good match between youth and job Help family member prepare for job interviews


Job Retention: Job Retention Helping a family member prepare for work each day can include: Backup for personal assistance staff Maintain assistive technology Provide transportation


Job Retention (Cont.): Job Retention (Cont.) Foster natural supports in the community Talk about everyday job-related frustrations Problem solve challenging workplace situations Identify early signs of serious problems at work


“Why Mothers Have a Tough Time”: “Why Mothers Have a Tough Time” If we are concerned, we are overprotective; if we are unconcerned, we are neglectful. If we are involved, we are demanding; if we are not, we are detached. If we have high expectations we are unrealistic; if we have simple aspirations, we set our sights too low. If we nurture generously, we are smothering; if we nurture less, we are withholding. If we offer advice, we are controlling; if we refrain, we are disinterested. If we phone, write or visit often, we are pests; if we don’t, we are uncaring. If we help with tasks or give or loan money, we cultivate dependency; if we don’t, we are unsupportive.


Family Involvement Principles and Strategies: Family Involvement Principles and Strategies Relationship building Communication – Importance of genuineness and empathy Welcoming atmosphere Respect – Refrain from judging and labeling "challenging" families too quickly Person Centered Programs


Beyond The Nuclear Family…: Beyond The Nuclear Family… Parent and Family Terminology— Changing Definitions of Family: Parents, children, siblings, and spouses Include blended and non-traditional families Grandparents, distantly related individual friends, neighbors, foster parents, or other significant adults in a young person's life may assume "parental” roles


Which Children Need Surrogate Parents?: Which Children Need Surrogate Parents? Must be special education student or in need of special education Wards of state Parents unavailable Parents unknown Parent requests a surrogate be named


Definition of Parent in Federal Regulations: Definition of Parent in Federal Regulations Parent Guardian Someone acting as parent Surrogate parent


What is the Role of a Surrogate Parent?: What is the Role of a Surrogate Parent? To act in role of parent To represent the interest of the child with a disability in educational matters


Responsibility of School: Responsibility of School Identify eligible children Recruit potential surrogates Provide for training Appoint surrogates


Who Can Be a Surrogate Parent?: Who Can Be a Surrogate Parent? Can Be: Foster Parent Community Volunteer Cannot Be: Employee of public agency involved in educational or care of child Person with conflict of interest


What Must a Surrogate Know? : What Must a Surrogate Know? Federal and state regulations District structure and procedures The nature of the pupil’s disability and needs Ability to effectively advocate for an appropriate educational program for the pupil


Family, Culture and Disability: Family, Culture and Disability Cultural differences and the role of parents and family in the lives of youth with disabilities Western culture adopts definitions of disability established by our legal or professional institutions Other cultures may define disability differently


Medical Western Model vs. Cultural Model: Medical Western Model vs. Cultural Model Assumptions: Disability is a physical condition Disability is an individual condition Disability is a chronic illness Disability requires a cure or “fixing” Disability is a spiritual condition Disability is a group condition Disability is a time-limited condition Disability must be accepted


Disability as a Spiritual Condition: Disability as a Spiritual Condition Examples: Disability is a punishment for past sins A child with a disability is a gift from God A child with a disability is an ancestor who has come back in the family


Disability as a “Group” Condition: Disability as a “Group” Condition The youth is not solely responsible for its occurrence Family members share responsibility for the occurrence of the disability


Disability Must Be Accepted : Disability Must Be Accepted For some non-western cultured families a child’s impairment is an act of God and is beyond human comprehension and ability to cure.