Disabilities in the home 

what is Family climate?

∙ Family climate and disability

o We will use the term “family climate” to refer to the general  atmosphere of the home

o Family climate can depend upon how well the family works as a  unit

∙ Experience, knowledge, and beliefs

o Recognition of disability can be influenced by past experiences o Religious beliefs are often an important part of how families  consider disability

o Families assimilate information about disability to develop  perceptions and understanding of disability

o Experience, knowledge, and beliefs influence perceptions of  disabilities:

 What is believed about “personhood”

 What is perceived as “normal”

 What is believed about “equality”

∙ Family ecology

o Family ecology refers to all elements that make up the family  unit

o family ecology that results in positive family climate allows  family members to participate in expected, routine activities. ∙ Siblings with disabilities

waht is Family ecology?

o Some similarities exist among siblings

 1. They find positive and negative results

 2. They grow toward acceptance of the disability

 3. Siblings experience a range of emotional responses

 4. Siblings generally report positive family relationships o Quality of life “domains”

 Joint activities

 Mutual understanding

 Private time

 Acceptance

 Forbearance

 Trust in well-being Don't forget about the age old question of what is the meaning of promotion in food services?

 Exchange experiences

 Social support

 Dealing with the outside world

o Disadvantages of having a sibling with ID or autism

 Infringements on time

 Less socialization

 Limited spontaneity; need for routines

 Children see parents under additional stress

 Financial demands

 Required to help with caregiving

 Perceptions of peers; acceptance from peers

what is Resilient families?

 Dealing with behavior issues

o Advantages of having a sibling with ID or autism

 Learn tolerance, acceptance, and patience

 Develop compassion and empathy

 More mature; strong character

 Willingness to help others

 Appreciate own life, health, etc

∙ Parents of children with disabilities

o Report greater levels of stress

o Some service organizations report frequent requests for respite  care from parents with disabilities

o Parents have the responsibility of providing care for their children who have disabilities

o Different disabilities require various types of care needs ∙ Day care for children with disabilities

o Day care concerns are complicated If you want to learn more check out What does it mean to be a high or low self-monitor?

o Parents of children with disabilities have added concerns ∙ Education for children with disabilities

o Learning problems can result in additional stressors related to  school experiences

o Emotional/ behavioral problems can result in additional stressors  o Educational services are provided under the Individuals with  Disabilities Education Improvement Act (IDEIA)

 Services can range from age 0-21

 Parents must consent to any services provided

 IDEIA requires parent participation in developing  

educational programs

o Parents need to be involved in planning their child’s life after  their school career ends. This is called transition planning  Transition planning is done through the school in  

collaboration with families, community members, etc

 ∙     Resilient families 

o Characteristics of resilient families

 Withstand hardships

 Rebound from adversity

 Become stronger and more resourceful

 Develop

∙    Routines

∙    Rules  

∙    Rituals

∙    “Criterion referenced” perspective

∙    Respite care and children with disabilities

o Respite care is short term, temporary care provided to people  with disabilities in order that their families can take a break from  the daily routine of caregiving… Respite care enables families to  take vacations, or just a few hours of time off

o Respite care can be provided

 In or out of the home

 Throughout the life-span

o Respite care providers vary

o Respite care benefits families

Medical issues and ID 

∙ Medical issues and ID If you want to learn more check out Also spoke about state of nature, but he saw it in a more cruel way than Locke. He says life was poor, solitary, nasty, brutish, & short.
Don't forget about the age old question of what is Cartilaginous Joints ?

o Some conditions related to ID also result in medical problems o People with ID are at greater risk for developing health problems o People with down syndrome often develop medical problems as  their lives progress We also discuss several other topics like What is the total cost?

∙ Medical problems and Down Syndrome

o Some common health problems associated with DS include  Hypotonia

 Vision problems

 Hearing loss  

 Heart defects

 Gastrointestinal defects

 Thyroid problems

o People with DS are less likely to have

 Hypertension

 Arthritis

o People with DS are more likely to have

 Poor dental care and condition

 Poor oral hygiene

o People with DS have higher incidences of epilepsy

∙ Accessing specialized health care

o Parents of children with disabilities often experience difficulty  finding appropriate health care providers

o Particularly problems are noted by families of children with DS,  autism, and health impairments If you want to learn more check out How many signals in the HNMR spectrum are there?

o Difficulty with accessing is consistent across disability areas  Families with more than one child needing specialized care  report more access problems

∙ Medical issues related to aging and ID

o Life expectancy for people with ID has increased

o Adults with ID have similar mortality rates as their age peers to  age 30-34

o Estimates of the number of people with developmental  disabilities 60 years and older in the US are over 525K

o Adults with ID have more medical problems than their age peers o Adults with ID are at greater risk for developing psychiatric and  mental disorders

o Diagnosis can be problematic

∙ Health decisions

o Who makes health and care related decisions for people whose  disabilities impede their ability to make decisions for  

themselves?

o What determines the level of impairment that prevents a person  from making their own decisions?

o What factors should be considered when making decisions for  others?

∙ Sexuality and ID

o Sexuality encompasses many dimensions

o Appropriate behaviors must be taught

o Attention to sexuality for people with ID is needed

o The need for protection due to risk of exploitation sometimes  leads to  

 Suppression of development

 Denial of rights

o Decisions should be guided by the principle of equal  

consideration

∙ Arguments leading to denial of rights

o Restrictions are imposed for the protection of the individual with  ID

o Ability to have “meaningful relationships” is impaired

o Ability to be a parent is questioned

o Risk that a child will be born with a disability

o Child’s right to have “satisfactorily functioning” parents ∙ Decisions about sterilization

o Consider the interests of potential parents with ID

o Consider the interests of others involved

o Consider legal implications

Parents with ID 

∙ Family climate and parents with disabilities

o The number of parents with ID is not known. However, it is  reasonable to expect the number to increase because of

 Greater recognition of the rights of people with ID

 Decrease in practices such as forced sterilization

o Parents with ID often experience difficulties

 They have difficulty learning about childcare

 They appear to be abusive or neglectful

 They are more likely than other parents to lose custody of  their children (at least temporarily)

 They often are not adequately represented during legal  proceedings

o Difficulties faced by parents with ID

 Poor communication skills

 Children are more likely to have ID

 Being “outgrown” by their children

 Ability to discern motives of others

 Lack of support network

o Parents with ID are more successful when they have parenting  support

∙ Support for parents with ID

o The combined skills model

 Assess areas of weakness/need in the family

 Identify appropriate supports