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Sustainable Family Care for Children with Disabilities

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Sustainable Family Care for Children with Disabilities

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McConnell, D., Savage, A., Breitkreuz, R., & Sobsey, D. (2015, July 7). Sustainable Family Care for Children with Disabilities . https://doi.org/10.1007/s10826-015-0245-0

The purpose of study is to investigate placement among families of children with disabilities in Alberta. This was a three-year study. 1300 family’s parent – carers were part of study. 84% never considered out of home care for their child. One in ten families with a special need’s child 13 to 18 years were seriously considered out of home placement. One in four families exhibit fiscal difficulties. All families face difficulties in feeling normal routine but families with children with disabilities find it hard to balance work, family and regular life instances. Study found families who are “doing their best” have more kinds of resources. These resources are shared parental responsibilities, flexible work hours, childcare arrangements. government funded support programs differ across countries, states, and provinces

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•	Articles that provide information and insight into the needs and characteristics of the families  

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•	Articles that provide information and insight into the needs and characteristics of the families  

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Krauss, L., & Olkin, R. (2020). Exploratory research with young adult children of parents with disabilities. Stigma and Health, 5(1), 2–10. https://doi-org.ezproxy.tru.ca/10.1037/sah0000169

This peer reviewed journal article illustrated a study which explored social factors that are related to child outcomes with a focus on the roles of assistance and support/resources.
Assistance and Support are important factors in quality of life for people with disabilities and their families. In a qualitative study, individuals with disabilities indicated higher quality of life when they had greater social support. Working toward creating more accurate and strength based perceptions of families with disabilities can help to decrease societal perceptions and contribute to resilience in families with disabilities.

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Articles that provide information and insight into the needs and characteristics of the families  

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Articles that provide information and insight into the needs and characteristics of the families  

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Kearney, P. M., & Griffin, T. (2001). Between Joy and Sorrow: Being a Parent of a Child with Developmental Disability. Journal of Advanced Nursing, 34:5. http://bit.ly/1pVIh7l

Penelope M. Kearney published an article titled, "

Between joy and sorrow: Being a Parent of a Child With Developmental Disability." This article explored the study of parents who have children with significant developmental disability and their experiences. Parents experienced anguish and sorrow. The parents also spoke of hope, love, strength and joy. The parents confronted difficulties but were said to be managed with optimism and numerous resources.

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•	A summary of Demographic and statistical information about the families in question

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•	A summary of Demographic and statistical information about the families in question

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Articles that provide information and insight into the needs and characteristics of the families 

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Articles that provide information and insight into the needs and characteristics of the families 

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Crawford, C. (2008) No Place Like Home: A Report on the Housing Need of People with Intellectual Disabilities. https://www.communitylivingbc.ca/wp-content/uploads/NoPlaceLikeHome.pdf

Cameron Crawford wrote a research report on the housing needs of people with intellectual disabilities. The article alerts readers that very few people with intellectual disabilities are living within the formal system of residential care facilities. Instead, they are more likely to be living with their parents or someone whom they are not related to by ties of kinship. The report discusses factors that help explain why people with intellectual disabilities are not moving to preferred options, the pros and cons of the housing that is available, and provides information on the development of housing options that would better meet the needs of this population.

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Economic Cost of Caring for Children with Disabilities in Canada

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Economic Cost of Caring for Children with Disabilities in Canada

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Burton, P., & Phipps, S. (2009). Economic Costs of Caring for Children with Disabilities in Canada. Canadian Public Policy 35(3), 269-290. doi:10.1353/cpp.0.0022.
Majority of Canadian families of children with disabilities experience economic costs, particularly if the child’s condition is severe.  Out-of-pocket expenditures are likely higher for American families than for Canadian families of children with disabilities. 5- to 14-year-olds, 28.4 percent have a mild disability, 25.7 percent have a moderate level of disability, 27.6 percent a severe and 18.3 percent a very severe disability.15 For 49.6 percent of the children in sample of children with disabilities, the condition was present before the age of three.  A sample of children with disabilities, 19.3 percent belong to lone-parent households, compared with 17 percent of all children in the general population in 2000. Taking all forms of disability-related expenses together, positive expenditures are made on behalf of 62.2 percent of children with disabilities. The most common type of expense is medication (36.5 percent), followed closely by transportation (32 percent). 54.7 percent of family’s report having full extended health insurance coverage, 26 percent partial coverage, and 19.4 percent no coverage.

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•	Articles that provide information and insight into the needs and characteristics of the families  

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•	Articles that provide information and insight into the needs and characteristics of the families  

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Friedman, C. (2019). Family members of people with disabilities’ explicit and implicit disability attitudes. Rehabilitation Psychology, 64(2), 203–211. https://doi-org.ezproxy.tru.ca/10.1037/rep0000265

Carli Friedman wrote a peer reviewed journal titled, " Family members of people with disabilities’ explicit and implicit disability attitudes," which described the study that explored conscious and unconscious attitudes towards people with disabilities by their family members of persons with disabilities. Findings revealed that family members hold unconscious negative attitudes towards people with disabilities. Although the family member has the best intentions, decisions about their loved ones with disabilities are not always neutral, but instead they are influenced by negative attitudes. The burden of negative attitudes should not be placed on the families or people with disabilities. Instead, we must all work together to reduce dominant social structures and oppression.

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https://youtu.be/Gws_2p3KszU
Three Moms talk about the struggles with raising kids with disabilities. One with Asperger’s, one preemie and lost half of brain due to brain bleed and the third is an eighteen-year-old male with what they think is a chromosomal defect but the mother is not quite sure because she does not want her son to be labeled. All the mother’s talk about how challenging it is to raise a child with a disability. They talk about when they were first told by doctors that their baby had a disability. The mothers say to form a support group to lean on in difficult times. It is reassuring to know that there are other parents that are going through challenging times. The mom’s also say to not put labels on your child because labels can become negative. All three mothers say to not beat yourself up over what you can not control, that it’s hard and you need to learn a lot, that your situation is not the worse case scenario and most importantly to not blame yourself over your child’s diagnosis. The mothers say that sometimes it is healthy to take a step back and just relax. Finally, the mothers say that the most important concept is to love your child no matter what.

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https://youtu.be/ty2P7fj6tOI

This video told a story of a young woman named Beth and a young man named Ben. The two of them got married and soon after found out they were expecting twins, Lauren and Matthew. Matthew was born with downsydnrome. The story gives a glimpse into the realities of what this particular family went through while raising twins and with one of them having a disability. The story explained how much the sister would help out around the household, the guilt she felt when she realized she was developing quicker than her brother and also felt as though she did not get as much attention. The parents were fighting a majority of the time and worried about money as Matthew requires special childcare. However, at the end of the day, love is what was most important for this family- no matter what.

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Ted Talk Message from the Father of a Special Needs Child

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Ted Talk Message from the Father of a Special Needs Child

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https://youtu.be/GCw8unuaStI
Mohan Rohan is a father of a young special need’s child from India.. Mohan’s son was born four weeks early at 1.8 pounds eight years ago and everything changed after.  The doctors figured out that Mohan’s son had a dopamine deficiency in which the doctor prescribed artificial dopamine. Mohan found a school with inclusive education. The students were inclusive but not the parents. This father understood that he could help other fathers through his own experience. Mohan states a statistic that 80 % of marriages end after five years of child’s development. Mohan wanted his son to have a normal childhood. When Mohan would take his son out in public it was mainly adults and elderly people who would stop and stare at his son. In the past Mohan would have got angry about people stopping and staring except now Mohan is calm and ask people if they have questions. Mohan says it is mainly about acceptability. This relevant to families with special needs children because it shows that a special needs child should be treated any child and that parents are not alone in their struggles.

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https://axis.bc.ca/
Axis mission statement is to be the leader in the delivery of community based social services while enhancing the lives of the diverse people we serve, our employees, and our partners. Axis has multiple services for numerous needs such as addiction counselling, support community outreach and community outreach. To help children with special needs, Axis offers a life skills course and for families they offer behavioral support. All Specialized Residential Services are tailored to meet the specific needs of the person served and include comprehensive plans which integrate life skills training, education or vocation support including home schooling, on-line schooling or other modified school work programs, positive recreation activities of choice and appointments and meetings for counselling, probation, mental health or health appointments. The programs are team driven and incorporate input from the person served, their families and professionals. Axis is relevant to human service workers because we will be working with children and families. It is useful to know where resources are located and what programs can help a child with disabilities and their family.

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Children's Therapy & Family Resource Centre

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Children's Therapy & Family Resource Centre

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http://www.kamloopschildrenstherapy.org/
The centre is a non-profit agency and has been owned and operated by the Thompson Nicola Family Resource Society since 1991. CARF offers occupational therapy, physiotherapy and a speech language therapist. The speech therapist at CARF is trained by the BC Early Hearing Programs. CARF has the Kamloops Autism Program which will provide early behavioral intervention between two and six years of age. Early intervention is to help children participate fully in all their daily activities, at home, at daycare/preschool, or in the community. These are just a few of the many programs that CARF offers. This centre is quite beneficial to parents and family members as it has many programs for various disabilities.  This information is relevant to Human Service practice because we as service providers need to know  what resources our community has to offer special needs children and families.

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Articles that provide information and insight into the needs and characteristics of the families 

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Articles that provide information and insight into the needs and characteristics of the families 

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Farrell, A. F., & Krahn, G. L. (2014). Family Life Goes On: Disability in Contemporary Families. Family relations, 63(1), 1–6.
https://doi.org/10.1111/fare.12053

Anne F. Farrell and Gloria, L Krahn published an editorial commentary article which introduces readers to content and findings of peer-reviewed articles based on special issues of Family Relations. The editors address unanswered questions and preview present time issues relating to disability in contemporary families. Some of the core themes present in the issue are: families with disabilites are diverse; economic hardship is more frequently a characteristic of families with disabilities compared to the general population; family life with disabilities is a journey that includes stress and resilience; differences in parent stress and parent perceptions of language development between parents of children with different disabilities; the effects that work stress had on the health of parents providing care for their adult children with serious mental illness; and sibling relationships and disability. The editors invite readers to read each of the contributions for the purpose of expanding perspective and advancing knowledge of disabilities within families.

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Parenting Twins With Disabilities (My Perfect Family: Twins)

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Parenting Twins With Disabilities (My Perfect Family: Twins)

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https://www.youtube.com/watch?v=kYULF0AdFXo
This video is a day in the life of a Family of 7, Mom, Dad, 5 children. Focusing on the third oldest children who are twins - Madeline and Felix (6yrs old) and they have two different disabilities. Madeline has septo optic dysplasia. Which is a defect in development of brain, her pituitary didn't develop and her optic nerves are underdeveloped. She also has a brain injury and is non verbal with fragile health. Felix has phocomelia. It's an interrupted development of long bones in his arms. He also has severe spinal scoliosis which is progressing rapidly. Requiring him to have surgery to slow the progression and stabilize curve. Until he gets spinal fusion surgery to correct it. Felix has some developmental delays. He's non verbal and autistic. It's a busy filled day getting the twins ready for school, making lunches, feeding them, giving them their medicine, while also attending to the other children. The twins have great support and aids at school to help them in their class rooms. The parents talk about the struggling in their relationship, over coming challenges and their bond to Madeline and Felix. The mom attends an organization that helps families with children with disabilities. It's helped her cope and talk with other parents going through similar situations.

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https://www.interiorcommunityservices.bc.ca/
Interior Community Services (ICS) is a non-profit accredited multi service agency providing supported programming to people of all ages. For over 45 years, ICS has been dedicated to meeting the community needs in Kamloops and the interior region. They offer a program that provides group work and tailored services to children and youth with special needs who are between 6 – 18 and their families. Interior Community Services offers a family counselling programs offering six to eight sessions, free of charge. ICS also offers a parenting, attachment and individual development program. In addition, they have a teen centre where teens can learn skills for life. This is beneficial knowledge for families with special needs because ICS offers many programs all over BC.  They offer programs for children and adults as well as free counselling sessions specifically for families. This information is good to know as a service worker because it is helpful to know where to find resources to help families and families with special needs.

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An intimate look at the life of a young caregiver | Caring for Tor

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An intimate look at the life of a young caregiver | Caring for Tor

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https://www.youtube.com/watch?v=-Txot1wGJkQ
Brother Stefane Alexis (age 24) takes care of his brother Tor (age 21) who's disability is cerebral palsy. At a young age Stefan came to understanding of Tor's disability and the whole family (mom, dad) contribute to assisting Tor's daily needs. Since Tor graduated from highschool, the services for him and time spent away from family during the day; had stopped. Meaning the father and mother had to work more which than left Stefan to care for his brother. The bond between them is beautiful and the family comes together in a loving way to care for Tor. Although Stefane loves and cares very much for his brother, there is some strain (mentally) and sacrifices and  and leaves Stefane questioning whether he should pursure his goals like his friends or continue to take care of his brother, Tor.

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The British Columbia Aboriginal Network on Disability Society (BCANDS)

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The British Columbia Aboriginal Network on Disability Society (BCANDS)

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(2020 -2021) BCANDS - British Columbia Aboriginal Network on Disability Society (p. 36 - 262)
http://www.bcands.bc.ca/programs-and-services/disability-services/
BCANDS is an Indigenous non profit, charitable society. They provide service needs for Indigenous peoples, family and organizations across Canada from education, employment, mobility, recreation, technology, health and wellness.

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(2020) People In Motion
https://www.peopleinmotion.org/
People In Motion provides programs and services for people with diverse abilities. They have an active living program, educational program, Tuesday night fitness and a summer youth program. Their 10 acre camp ground is located in White Lake. They have also provide transportation to the programs, and chart out the transit when its available.

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Developmental Disabilities Mental Health Services - Canada Way. (n.d.). Retrieved November 14, 2020, from http://www.vch.ca/Locations-Services/result?res_id=1289

This resource is called Vancouver Coastal Health Services. This service helps people with Developmental Disabilities with their mental health needs. They do assessments on well being and behavior. They support clients on one on one or at hospitals for people in crisis, together with case management.

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Developmental Disabilities Association

DDA's History. (2020, October 26). Retrieved November 15, 2020, from https://www.develop.bc.ca/about-us/ddas-history/

DDA is an organization that supports and gives resources for people with disabilities. This organization was formed in 1952 when a group of families with kids with diverse abilities. They wanted to get public schools to be more inclusive to students that are different or unique. When the 90s hit, the group of parents, called the Vancouver-Richmond Association for Mentally Handicapped People, had become Canada’s largest charitable society of its kind west of Toronto. They eventually changed the name to DDA. The first priority of the group was to create resources for education. The organization slowly grew to other service needs over time.

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Matthew Williams,

How much do you know about intellectual disabilities? | Matthew Williams | TEDxVancouver [Video file]. (2015, December 9). Retrieved November 17, 2020, from https://www.youtube.com/watch?v=BURbLmQL1BE

https://www.youtube.com/watch?v=BURbLmQL1BE

He has played basketball and other sports on an international level, through the special Olympics. He is worried that his intellectual disability would change the way people think of him. The world still doesn't see people with intellectual disabilities. People don't notice that special Olympics games even happen. The Special Olympics transforms the athletes' lives. He has a history of feeling left out, and people with intellectual disabilities were hidden away. They were not valued. The opportunity to participate had many shown benefits. The lack of opportunity to participate affected the fitness levels of people with IDD. Many people still had their doubts about the benefits sports can bring. The athletes kept proving the studies right 4.5 million times over. Before he joined the Special Olympics he was shy, lonely, and without many friends.  Everyone was supportive and accepting. He made it to the summer games in LA for basketball. The people of special Olympics also provide education on health and well being and health screening. The support given increased the athlete’s confidence. Half of the adults in the US don't know a single person with an intellectual disability. The people who don't have the connection are less accepting. Matthew goes on to talk about how people need to stop using the R-word due to how hurtful it is. Special Olympics teaches the world that people with IDD need respect and inclusion.

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The Varnier Institute of the Family (2010) Families Count: Profiling Canada’s Families, 148-149, Retrieved on November, 12th 2020 from https://moodle.tru.ca/pluginfile.php/1512538/mod_resource/content/2/Families-Count.pdf.

Many families living with a child with a disability “tend to experience higher levels of stress, illness and strain on their relationships”.  81.7% of parents who have a child with a severe disability reported experiencing the aforementioned difficulties and 46.2% of parents with a child who has a less severe disability reported the same.  These families also face struggles of managing their time, with 38.4% of parents reducing their hours of work and 21.6% quitting work altogether.  There is a “very high risk of separation and divorce” among parents with children who have disabilities.  76% of parents “reported that their child’s disability had led to their separation or divorce”, this percentage is higher if their child had a severe disability.