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family eex

family eex

Description

School: University of Florida
Department: Psychology
Course: Impact of Disabilities
Professor: Penny cox
Term: Spring 2017
Tags: family, home, Disability, exam, Studyguide, study, and Parenting
Cost: 50
Name: Impact of Disabilities / Exam 2 Study Guide
Description: Exam 2 Guide All Lecture Notes Family & Home Family Home Parenting Parents with Intellectual Disability
Uploaded: 03/14/2017
11 Pages 126 Views 0 Unlocks
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2) Family Ecology: What makes a family the unit that it is?




What is expected of normal behavior?




What can they do to contribute at all?



Day 5 2/14/17 FAMILIES AND DISABILITY 1) Experience, Knowledge, Beliefs a. Recognition of a disability can be influenced by past experiences. b. Religious beliefs are often an important part of how families  consider disability i. See it as God has chosen this ii. To show us a new perspective on life / enhance family c. FamilieDon't forget about the age old question of vaenget nord
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s assimilate information about disability to develop  perceptions and understanding of disability d. Experience, knowledge, and beliefs influence perceptions of  disabilities: i. What is believed about “personhood” 1. Some families expect people to be individualistic a. Can our disabled member make decisions  about his/her own life? 2. Some are more collective a. Can they contribute to the collective as much?  What can they do to contribute at all? ii. What is perceived as “normal” 1. What is expected of normal behavior? 2. Doing things within home? 3. How does disability change these iii. What is believed about “equality” 1. Is every family member expected to do the same  things? 2. Or are everyone’s expectations different? 3. Do they lose value if they can do less? Or is there  going to be a different perspective? e. Prof Cox tells story of student with borderline intellectual  disability i. IQ: low 70s ii. Parents are doctors and lawyers iii. Didn’t have way to gauge expectations iv. Dad asks “is he college material?” 2) Family Ecology: What makes a family the unit that it is? a. 1 or 2 parent b. Number of children c. SES: Socio-Economic Status i. Financial strains can be exascerbated by disability ii. Children with Ds have more financial requirements 1. Doctors 2. Diets3. Tutoring 4. medication 5. etc d. Family workloads i. Mom is thought of as primary caregiver ii. Child w D may require these “care” responsibilities longer  than usual 1. Bathroom training 2. Feeding 3. Dressing 4. Etc 5. MOTHER is probably doing this, thus heavier  workload e. Connectedness i. Are they aware of other family members f. FLOWCHART: this happens if family ecology is positive and  smooth i. Positive home environment ii. Family members able to participate in expected activities iii. Sustain routine 1. Parents of PWD say this is most important thing to  keep going 2. Being able to know what to expect 3. Families without routine can become chaotic 3) Siblings a. The following describes how non-disabled siblings felt  about their sibling with disabilities and parents  b. Relationship with Others i. Down Syndrome (sibling on non-disabled child has DS) 1. Parents more lenient with sibling 2. Greater family togetherness 3. Higher levels of support from peers compared to ASD ii. DS and ASD 1. Positive relationship with sib 2. Value and care of sib 3. Share bond 4. Less attention from parents iii. Autism spectrum 1. More difficulty associated with a. Severity b. Communication 2. Stress due to behavior 3. Teasing by peers a. Kids will make fun of disabled sibling or the  non-disabled sibling 4. Less nurturing compared to DS c. Perceptions i. DS 1. More likely to view positively 2. Just a borther or sister 3. Fun 4. Emphasized positive personality characteristics ii. DS and ASD 1. Proud of sibs efforts and achievements 2. Positive aspects of experience of having sib with  disability iii. ASD 1. Varied perceptions a. Embarrassed b. Stressful c. Learned from experiences i. Appreciate differences ii. Maturity iii. Grow as indviduals iv. Deal w problems 2. Some worried about sibling’s future  d. Emotional Reactions i. DS 1. Frustrated with communication difficulties ii. Both 1. Feel badly when sib is teased 2. Embarrassedd or angered by unusual behaiors 3. Have empathy iii. ASD 1. Anxiety 2. Higher levels of depression  e. Behavioral/Personality outcomes i. DS ii. DS and ASD 1. Well adjusted 2. Helpful; responsible 3. Caring 4. Empathetic iii. ASD 1. Impacted by severity 4) Quality of Life Domains a. Acceptance/Forbearance b. Joint Activities/Private Time i. Wanted to be able to spend time with sibling ii. Had to modify activities iii. There are times when you want to be separate from sibling 1. Be free from responsibilities of disabled siblingc. Social Support/Exchange Experiences/Dealing with outside world i. Being able to interact with other people who have similar  experiences ii. Talk to people who also have brother/sister who has  disability d. Mutual Understanding/Trust in Well-Being 5) Advantages/Disadvantages: having a sibling with a disability a. Disadvantages i. Infringements on time ii. Less socialization iii. Limite spontaneity; need for rigid routines iv. Children see parents under stress v. Financial demands vi. Required to help with caregiving vii. Percetions of peers, acceptance from peers viii. Dealing with behavior issues b. Advantages i. Learn tolerane, acceptance, patience ii. Develop compassion and empathy iii. More mature; strong character iv. Willingness to help others v. Appreciate own life, health, etc EEX Day 6 2/21/17 Parents of Children with Disabilities 1) Responsibilities and roles of parents a. Teach right/wrong i. School/homework ii. Life skills iii. religion b. Physical Needs c. Emotional Needs (nurturing) d. Financial Support i. Future care ii. Advocate for child 2) Characteristics of Resilient Families a. Rules b. Routines c. Rituals d. Criterion referencing/reconstructing reality and meaning e. Tenacity 3) Parents of Children with Disabilitiesa. Report greater levels of stress b. Service organizations report frequent requests for respite care  from parents of children with disabilities i. Respite care: Parent needs break 4) Choosing services a. Parents have the responsibility of providing care for their children who have disabilities b. Different types of disabilities result in various types of care needs c. We will examine areas that parents must consider in caring for  children with disabilities d. Day care concerns are complicated by the presence of a  disability 5) Education a. Learning problems can result in additional stressors related to  school experiences b. Emotional/behavioral problems can result in additional stressors  related to school and community experiences c. Educational services are provided under the individuals with  disabilities education improvement act i. Parents must be involved in decision making instead of  school system making all decisions for child d. IDEIA requires parent participation in developing educational  programs for student with disabilities e. Services can start at birth and go through age 21 f. Parents need to be involved in planning for their childs life after  their school career is over. This is called transition planning g. Transition planning is done through the school in collaboration  with families, community members, etc 6) Planning for the future a. What happens when parents are no longer able to care for their  children with disabilities? i. If I die, get sick, etc ii. Financial challenge of this problem b. Parents express concerns about a variety of issues 7) Guest Speaker – Margi Garlin, son has Autism a. Works for Center for Autism and related disabilities i. 7 CARD centers in florida ii. CARD staffed by professionals and parents that are  knowledgeable about ASD iii. We are here to support families, professionals, school,  community agencies and anyone who is involved with a  person with ASD iv. CARD centers were founded in order to assist families in  finding appropriate resources for their children with  autism/ASDv. Our MAIN mission is to “build capacity”: teach a man to  fish vs. give a man a fish vi. Margi is a Parent Partner who acclimates families to the  CARD services and helps them transition their child into  adulthood. She also works as Chair of District 3 Family  Care Council b. Bryan i. From very young age: little social interaction, little speech ii. Didn’t have meaningful communication until later on w/  speech therapy iii. Diagnosed with autism at 2.5 years old iv. Enjoyed video games, TV, amusement parks v. Wants to be a Graphic Artist or Designer vi. Created Cartoon called “Harry the Fox” EEX Day 7 2/28/17 Home 1) Medical Issues and ID a. Some conditions related to ID also result in medical problems b. People with Id are at greater risk for developing health problems c. People with Down Syndrome often develop medical problems as  their lives progress 2) Medical problems and down syndrome a. Some common health problems with DS include i. Hypotonia ii. Vision problems iii. Hearing loss iv. Heart defects v. Gastrointestinal defects vi. Thyroid problems b. Less likely to have i. Hypertension arthritis c. More likely to have i. Oral hygiene problems ii. Epilepsy 3) Accessing specialized health care a. Parent sof children with disabilities often experience difficulty  finding appropriate health care and health care providers b. Particularly, problems are noted by families of children with DS,  autism, and health impairments c. Common problems arei. Getting referrals (when covered by insurance) and  appointents ii. Finding providers with experitise in the area of need iii. Coordination of services 4) Medical issues related to aging and ID a. Life expectancy for people with ID has increased i. Due to medical problems, poor living conditions, life  expectancy was lower in the past ii. Improved conditions and services have lead to life  expectancy closer to that of non-disabled individuals b. Age related issues for people ID are becoming more visible c. Adults with Id are at greater risk for developing psychiatric and  mental disorders i. Incidence is about 5 times greater than their age peers d. Diagnosis can be problematic i. Complicated by poor verbal skills ii. Made by observing changes in behavior e. Some conditions commonly developed are: i. Adaptive behavior difficulties ii. Behavior disorders iii. Dementia 5) Health decisions a. Who makes health and care related decisions for people whose  disabilities impede their abiity to make decisions for themselves b. What determines the level of impairment that prevents a person  from making their own decisions? c. What factors should be considered when making decisions for  others? 6) controversial decisions a. the Ashley treatment (peter pan surgery) i. parents do it for disabilities that make taking care of child  with the disability MUCH more difficult when they grow  older ii. remove uterus and breast plates: prevents child from  entering puberty iii. stays at child size b. how do you make a decision on the behalf of someone who cant  articulate what they want???? 7) Sexuality and ID a. Sexuality encompasses many dimensions i. Physical maturation ii. Social relationships iii. Future social aspirations b. Appropriate behaviors must be taught i. Might not be acquired through observation and interactionii. PWD in inclusive settings are expected to behave  appropriately 8) Teaching appropriate behavior a. Anatomy/physiology b. Empowerment (self-determination) c. Relationships d. Social skills e. Participating in social opportunities 9) Teaching appropriate behavior a. Develop a plan b. Explicit instruction i. Task analysis ii. Social stories c. Illustrate personal boundaries 10) Sexuality and ID a. Attention to sexuality for people with ID is needed i. Its an area of personal growth that can lead to exploitation  and abuse ii. It effects the individual, their family, and society b. The need for protection due to risk of exploitation sometimes  leads to i. Suppression of development ii. Denial of rights c. Decisions should be guided by the principle of equal  consideration i. Consider decisions for a person with IOD the same way it  would be made for a non-disabled person 11) Valerie from Law and Order: VIDEO a. Video where group of non-disabled boys were in court for having  sex with obviously disabled girl… but legality is ambiguous  because her consent and awareness is ambiguous b. Does Varlie know about i. Anatomy? yes ii. Self Determination? Likely iii. Relationships? Probably not iv. Social Skills? No: does not have wholistic understanding of  logistical part of situation. 12) Arguments leading to denial of rights a. Restrictions are imposed for the protection of the individual with  ID b. Ability to have “meaningful relationships” is impaired c. Ability to be a parent is questioned d. Risk that a child will be born with a disability e. Child’s right to have “satisfactiorily functioning parents” 13) Decisions about Sterilization a. Consider the interests of potential parents with IDi. Is the person competent to tmake a decision about  sterilization?  ii. Does the person understand what is being done? iii. Can the person consider the burdens and benefits of  parnthood? b. Consider the interests of others involved i. Child ii. Family members or guardians c. Consider legal implications i. What is the legal definition of competence? ii. How does this related specifically to the person’s ability to  consent to sterilization? EEX Day 8 3/14/17 Impact of Disabilities: Home 1) Parents with ID a. The number of parents with ID is not known. However, it is  reasonable to expect the number to increase because of i. Greater recognition of the rights of people with ID ii. Decrease in practices such as forced sterilization b. Consider roles and responsibilities of parents i. How does ID impact their ability to fulfill those  roles/responsibilities? c. Matthew and Rhonda i. Couple who both have ID ii. Professor Cox asks to examine how they speak, and their  living circumstances 1. Both Matthew and Rhonda have obvious Intellectual  disabilities 2. Matthew has very simple speech and forgot to wear a condom and so he got Rhonda pregnant 3. Rhonda thinks that people who have ID and have  children maybe should or maybe shouldn’t have  children 4. Matthew’s Little Brother annoys him the same way  that a little brother would be if they were closer in  age, but Matt is 28 5. Matthew and Rhonda didn’t want to live together in  their own home with their baby (shows they don’t  feel able to take care of it) iii. What might Matthew and Rhonda struggle with while  raising the child? 1. Schoolwork2. Safety-proof house 3. Healthcare 4. Teaching socialization 5. Teaching about their own ID if the baby has it too 6. Teaching decision making d. Common issues for parents with ID i. Poor communication skills ii. Children more likely to have Id iii. Being “outgrown” by their children iv. Ability to discern motives of others v. Lack of support network e. Common difficulties for Parents with ID i. Learning about childcare ii. Appear to be abusive or neglectful iii. More likely than other parents to lose custody of their  children (at least temporarily) iv. Often not adequately represented during legal proceedings f. Sam Dawson and supports for Parenting: Video example (Lucy is  Baby) i. Lucy is baby, Sam is parent. Lucy doesn’t have ID.  Through the video Lucy goes from Age 0 to age about 4 ii. Areas of weakness or need 1. What problems does Sam have? Why? a. Baby always cried through night b. He didn’t know how often to feed it c. Didn’t know what baby products were needed d. Eventually, Lucy gets taken from Sam and he  finds himself in a legal dispute e. Doesn’t understand Lucy’s emotional needs f. Doesn’t understand court proceedings 2. What were Lucy’s needs? a. Diapers, food, attention through the night b. Emotional c. Learning Adult behaviors iii. Supports to help in areas of weakness or need 1. What would help Sam with the problems he had? a. Having a schedule with directions b. Being told when to change the schedule c. Teaching Sam to ask for help d. Giving Sam a support network e. Giving sam a job and thus co-workers leading  to friends 2. What would help Lucy? a. Somebody to teach her adult behaviors b. Caregiver 2) Factors associated with Successful parenting for parents with IDa. Milder ranges of ID/Education/Reading skills b. Being Married/living with family members/daily support from  typically functioning adults c. Willingness to accept support d. Having few children, or only one child e. Growing up with good parental models f. Adequate finances g. In home training 3) Possible supports a. In home visits b. Child care/early intervention services c. Shopping/money management d. Transportation e. Service coordination f. Play groups for children g. Basic academics h. Mental health counseling

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