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Family Perspectives on Special Needs Care

This document discusses several topics related to families who have members with disabilities. It addresses the climate and ecology of families, similarities reported by siblings of those with disabilities, domains of quality of life for joint activities and trust. It also discusses parents with disabilities, transition planning for children with disabilities, respite care, health care access problems, life expectancy for those with Down syndrome, issues around sexuality and development, characteristics of resilient families, and reasons parents may not plan for future care of their children with disabilities.

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4 views3 pages

Family Perspectives on Special Needs Care

This document discusses several topics related to families who have members with disabilities. It addresses the climate and ecology of families, similarities reported by siblings of those with disabilities, domains of quality of life for joint activities and trust. It also discusses parents with disabilities, transition planning for children with disabilities, respite care, health care access problems, life expectancy for those with Down syndrome, issues around sexuality and development, characteristics of resilient families, and reasons parents may not plan for future care of their children with disabilities.

Uploaded by

RickySpence
Copyright
© All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
Available Formats
Download as DOCX, PDF, TXT or read online on Scribd

Family perspectives

Climate
o

Refers to the general atmosphere in the home, can depend upon how
well the family works as a unit.

Ecology

Refers to all elements that make up the family unit.

Siblings

Similarities

Similarity 1: They find positive and negative results.


Similarity 2: They grow toward acceptance of the
disability
Similarity 3: Siblings experience a range of emotional responses.
Similarity 4: Siblings generally report positive family relationships.

Quality of life domains

Joint Activities
Mutual Understanding
Private Time
Acceptance
Forbearance
Trust in

Well-being

Exchange Experiences
Social

Support

Dealing with the Outside World

Parents with disabilities

Combined Skills Model

o
Parents of children with disabilities

Special education, transition planning, and parents

Parents need to be involved in planning for their childs life


after their school career is over
Transition planning-

Respite care

Organizations that offer to take care of the disabled persons while the
parents "take a break."
Health care decisions and problems

Parents of children with disabilities often experience difficulty finding


appropriate health care and health care providers
Particularly, problems are noted by families of children with DS, autism,
and health impairments
Difficulty with accessing care is consistent across disability areas
Families with more than one child needing specialized care report more
access problems
o

Life expectancy for people with DS


o

60

Sexual development and rights of people with disabilities

Ashley treatment

refers to a controversial set of medical procedures undergone by a Seattle


child "Ashley X" born with severe developmental disabilities due to static
encephalopathy
she will remain at an infant level mentally and physically- growth
attenuation
Principle of equal consideration

one should both include all affected interests when calculating the rightness of an
action and weigh those interests equally.
o

Equal rights when it comes to sexual development

Characteristics of resilient families (from Knestrict & Kuchey, 2009)

Rules
Routines
Rituals
Tenacity
High socio-economic status
Criterion Referencing
Reasons parents don't make plans for the future care of their children with disabilities
(from Bibby, 2012)

Parents often felt that their own standards of care could not be met by anyone
else and were therefore not willing to plan for a substandard care arrangement.
A wish to oversee care and talk of a supported housing facility, and the paralysis
in decision-making was caused by the overwhelming stress

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