Parents with disabilities

Last updated
Parent and child Parent-left child-right yellow-background.svg
Parent and child

Parents with disabilities are people with certain disorders (mental, physical, or other types) who are raising young children or being cared for by their young children.

Contents

Disability brings various problems to the parents themselves, their children and the whole family. Researchers have studied the effects and issues raised by disabled parents. Aiming to help parents with disabilities, organizations and governments have delivered relevant strategies to provide support.

The term ‘disability’ refers to the existence of one or more long-term restrictions in any core activities including self-care, mobility, communication, or employment. [1]

Classification of disabilities and issues

Disability includes a range of distinctive disorders varying in type of condition and severity. The difficulties associated with them vary depending on families' life stage and types of impairment. [1] [2]

Physical disability is the relatively more commonly occurring one[ citation needed ]. Among children living with a disabled parent in Australia, 91% of them have a physically disabled parent while 11% have a parent with mental or behavioral disabilities. [1]

Physically disabled parents

“Physical condition[s] include cancers, endocrine diseases, diseases of the nervous system, eye, ear, circulatory system, respiratory system, digestive system and musculoskeletal system, congenital disorders, injuries and other physical conditions. ” [1] Much research of physically disabled parents has historically been based on negative hypotheses and recommended conclusions. Parents with physical or sensory disabilities experience misunderstanding of their parenting abilities. [3]

Deaf parents

Disabled veteran with a child Disabled veteran - NARA - 195917.jpg
Disabled veteran with a child

Deaf parents face communication barriers which may limit their participation in some social networks. [2]

Visually impaired parents

Visually impaired parents face difficulties in ensuring a safe environment for both their children and themselves, as well as the restriction in accessible activities for them to take part in with their children. [2]

Mobility difficulties

Mobility difficulties make parents rely on others or certain equipment like a wheelchair to support them. More energy and time is often required for them to move from one place to another.  [4]

Chronic pain

Chronic pain causes stress and could make parents become less patient with their children in daily life. More rest is needed, which limits the time allocated for parenting. The side effects caused by pain relief and other necessary medicines including possible addiction is another challenge faced by parents with chronic pain.  [4]

Mentally disabled parents

Mental or behavioral disorder includes psychoses, neuroses, intellectual and developmental disorders, and other mental or behavioral disorders.

[1]

Intellectual disabilities

Parents with intellectual disabilities face discrimination in their parenting role. [3] They have difficulties managing housing and financial issues because of their socio-economic disadvantage, which may lead to debt. As their children grow up and their intellectual ability surpasses their parents', new challenges arise like providing children with assistance in education. [2] A 2018 systematic review found low quality evidence that some parents, mainly mothers with intellectual disabilities, provided effective parenting when provided training and support for the required skills. [5]

Learning difficulties

Parents with learning difficulties need help to process information and manage tasks. The way in which they gain and understand information is different from parents without these disabilities. Because of this, many face social criticism and stigma. [4]

Young carer

The term ‘young carer’ means children who participate in taking care of their parents in life. [6]

Types of caring activities provided by children

Young boy at work Young boy at work.jpg
Young boy at work

Age and identification

Comparing to children in young age, more children in high school age are taking the responsibility of caring for their disabled parents, which reflects that whether higher-aged children are more possible to have disabled parents or children of higher age are more often asked to provide their parents with assistance thanks to their higher-levelled capacity. [1]

According to the data resulted from the research, the local disabled parents in Leicester and Leicestershire of UK are less likely to identify children aged between 12 and 19 as young carers. This fact illustrates that rather than what children virtually do parents rely more on broader social relations within the family when they consider whether their children should be defined as ‘young carers’. [6] Whereas doctors depend on how much burden a child take in caring to identify young carers. [7]

School teachers play crucial role in identifying young carers in early age and offering help. [7] The young carers identified by teachers are in averagely younger age than those identified by doctors, which makes it important for primary teaching institutions especially to identify young carers. [7]

Why children become young carers

Participants from a Young Carers workshop held in Wellington, New Zealand in 2005 indicated that New Zealand children and young people become young carers mainly because of cultural expectations, nature of disability, awareness and acceptance of services, and other reasons relating to the family unit like no one else is taking the responsibility. [2]

Impacts on young carers

Negative

When young carers are not supported, negative outcomes will apply. These consequences involving both young carers' social and personal life. [8]

  • Children's academic achievement is negatively impacted due to the time they spend on doing caring activities for disabled parents. [7] Young carers' academic outcomes are below their peers and boys are effected more severely than girls. [9]
  • Further study impacted. The number of young carers who want to continue studying in university is fewer than normal students, [9] whether because of financial difficulties or need of time for caring. [7]
  • Young carers are afraid of being seen differently. They feel anxious and worried. [7]

Positive

  • More mature than peers, greater sense of responsibility. They feel proud and happy to be able to care for families. [7]

Support towards young carers

Large number of young carers have to sacrifice their future to take care of their family. Institutions that have close connection with young carers including schools and social service departments need to search for young carers and provide proper support. [7] For example, transport services should be offered to children whose parents are unable to take them to school. School should train teachers to be aware of young carers and build special mechanism to assist young carers. Connection with other local young carer service institution also needs to be established. Other useful support include emotional support, opportunity of meeting others in similar situation, counseling and so on. [7]

Effects on children

About negative effects

The lack of relative research in this area leads to the prejudice that disabled parents negatively affect their children, which is inaccurate. [3] As high-quality studies state, the sources of problems happening in parenting with disability is the same as that in non-disabled parenting, which include parents' former experience of being abused physically, sexual, or on substance, poverty, lack of appropriate support and so on. The disability in parenting alone, is not the cause of negative impact to children. [3]

It is widely considered that children's participation in education will be negatively influenced by their parents' disability. [1] 1998 Survey of Disability, Aging and Carers provided broad data showing this kind of impact is relatively low by comparing the number of children participating school from families with and without disabled parents. However the data does show that the existence of disabled parents will negatively influence further education. [1]

About positive effects

Little difference is found between the household tasks done by children with or without disabled parents. And life details of children with disabled parents like the number of friend and activities they do with parents are almost same with those of children with non-disabled parents. [10]

Children who have parents with disabilities even have an “average to better-than-average” development. [3] Children from the family with disabled parents are more skilled at solving problem, more compassionate, more respectful towards disabilities and differences, more sensitive about justice and more independent. [3] Parents with intellectual disability always have a strong and warm family bonds with their children, even when some children were removed by welfare system. [11] And most children of disabled parents regard their childhood as happy memory. [11]

Researchers at Israel's Bar Ilan University has delivered a study and the result shows that children who have parents with sensory impairment are more empathic and shows higher awareness of emotions of others than other children from normal families. Other advantages of children with disabled parents like greater maturity, higher sensitivity and more abundant life experience were also reported by earlier research. [12]

The needed support

How supports need to be

Types of needed support

Peer support

which is the assistance from people in similar situation. It's of great importance since it provides parents with disability the opportunity of sharing and communicating with others who are experiencing similar life [13] Owing to the scarce information about parenting with disability, the peer support network plays an even more significant role. [3]

Support in education system

The facilities and environment of school should be accessible to all including disabled and normal parents, students and staffs. Inaccessible school facilities lead to lack of participation in children's school life for physically disabled parents. For parents with sensory impairment, appropriate way of communication with school is essential. [2]

Need of special equipment

Parents with physical disabilities mention difficulties in taking care of children without proper equipment and with restriction in mobility. Deaf parents need equipment to be alerted when children are in need of help. [2]

Hearing Aid Hearing aid 20080620.jpg
Hearing Aid

Financial support

Comparing to non-disabled parents, more disabled parents are not employed. Families with disabled parents also face extra expanse during daily life and parenting tasks due to their disability. They are more likely to experience the pressure of poverty and depend on public benefit. [3] There are this kind of family not qualified for financial support because of their medium income level, which prevent them from affording special equipment and services. [14] The public benefit should be accessible towards disabled parents.

Physical and mental health care

Parents with disabilities face barrier when attempt to get access to health care, especially women. Professionals in health care hold negative attitudes towards disabled parents, and underestimate life quality of disabled people. [3] Depression is another significant issue faced by disabled parents. Women with disabilities have six times more chance than normal women to have depression. [15] Appropriate service and support is necessary for disabled mothers under the effect of depression.

Support in personal daily life

A large number of disabled parents reported the need of assistant in daily living activities like cooking, toileting and cleaning. Assistance in parenting tasks including taking recreational activities with children, carrying and holding children and so on are also reported as needed by parents with disabilities. [3]

Related Research Articles

<span class="mw-page-title-main">Disability</span> Impairments, activity limitations, and participation restrictions

Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society. Disabilities may be cognitive, developmental, intellectual, mental, physical, sensory, or a combination of multiple factors. Disabilities can be present from birth or can be acquired during a person's lifetime. Historically, disabilities have only been recognized based on a narrow set of criteria—however, disabilities are not binary and can be present in unique characteristics depending on the individual. A disability may be readily visible, or invisible in nature.

<span class="mw-page-title-main">Occupational therapy</span> Healthcare profession

Occupational therapy (OT) is a healthcare profession that involves the use of assessment and intervention to develop, recover, or maintain the meaningful activities, or occupations, of individuals, groups, or communities. The field of OT consists of health care practitioners trained and educated to improve mental and physical performance. Occupational therapists specialize in teaching, educating, and supporting participation in any activity that occupies an individual's time. It is an independent health profession sometimes categorized as an allied health profession and consists of occupational therapists (OTs) and occupational therapy assistants (OTAs). While OTs and OTAs have different roles, they both work with people who want to improve their mental and or physical health, disabilities, injuries, or impairments.

Special education is the practice of educating students in a way that accommodates their individual differences, disabilities, and special needs. This involves the individually planned and systematically monitored arrangement of teaching procedures, adapted equipment and materials, and accessible settings. These interventions are designed to help individuals with special needs achieve a higher level of personal self-sufficiency and success in school and in their community, which may not be available if the student were only given access to a typical classroom education.

People with disabilities in the United States are a significant minority group, making up a fifth of the overall population and over half of Americans older than eighty. There is a complex history underlying the U.S. and its relationship with its disabled population, with great progress being made in the last century to improve the livelihood of disabled citizens through legislation providing protections and benefits. Most notably, the Americans with Disabilities Act is a comprehensive anti-discrimination policy that works to protect Americans with disabilities in public settings and the workplace.

Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.

<span class="mw-page-title-main">Invisible disability</span> Disability that is not immediately noticeable to others

Invisible disabilities, also known as hidden disabilities or non-visible disabilities (NVDs), are disabilities that are not immediately apparent. They are typically chronic illnesses and conditions that significantly impair normal activities of daily living.

A group home, congregate living facility, care home, adult family home, etc., is a structured and supervised residence model that provides assisted living and medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large as 100 individuals in 2015, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.

Emotional and behavioral disorders refer to a disability classification used in educational settings that allows educational institutions to provide special education and related services to students who have displayed poor social and/or academic progress.

<span class="mw-page-title-main">Intellectual disability</span> Generalized neurodevelopmental disorder

Intellectual disability (ID), also known as general learning disability in the United Kingdom and formerly mental retardation, is a generalized neurodevelopmental disorder characterized by significantly impaired intellectual and adaptive functioning. It is defined by an IQ under 70, in addition to deficits in two or more adaptive behaviors that affect everyday, general living. Intellectual functions are defined under the DSM-5 as reasoning, problem‑solving, planning, abstract thinking, judgment, academic learning, and learning from instruction and experience, and practical understanding confirmed by both clinical assessment and standardized tests. Adaptive behavior is defined in terms of conceptual, social, and practical skills involving tasks performed by people in their everyday lives.

Mental disorders diagnosed in childhood can be neurodevelopmental, emotional, or behavioral disorders. These disorders negatively impact the mental and social wellbeing of a child, and children with these disorders require support from their families and schools. Childhood mental disorders often persist into adulthood. These disorders are usually first diagnosed in infancy, childhood, or adolescence, as laid out in the DSM-5 and in the ICD-11.

Special educational needs (SEN), also known as special educational needs and disabilities (SEND) in the United Kingdom refers to the education of children who require different education provision to the mainstream system.

Multiple disabilities is a term for a person with a combination of disabilities, for instance, someone with both a sensory disability and a motor disability. Additionally, in the United States, it is a special education classification under which students are eligible for services through the Individuals with Disabilities Education Act, or IDEA. Not every governmental education entity uses the classification, however.

Four million people in Australia (18.5%) reported having a disability in 2009, according to the results of the Survey of Disability, Ageing and Carers. Males and females were similarly affected by disability.

<span class="mw-page-title-main">Institutionalization of children with disabilities in Russia</span> Placement of children, who have been abandoned or whose parents cannot support them, into a facility

Institutionalization of children with disabilities in Russia is the placement of children, who have been abandoned or whose parents cannot support them, into a facility which can be similar to an orphanage. This often occurs in countries where alternative methods of care are not available. The definition of an institution can be ambiguous; the "Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care" defines an institution based on the following guidelines:

Disability in China is common, and according to the United Nations, approximately 83 million people in China are estimated to have a disability.

<span class="mw-page-title-main">Youth and disability</span>

Approximately 180-220 million young people live with disabilities globally, with 80% living in the developing world, therefore lacking access to education, healthcare and employment [1]. Disability includes physical, mental or mental illness. Many young people live a healthy and stable life, although people with disabilities may have more obstacles than those without because of their possible limitations, created by physical weakness and social incapacity..

<span class="mw-page-title-main">Disability in Brazil</span>

Disability in Brazil is defined when individuals struggle or are unable to complete standard everyday tasks. This is measured by the health indicators of daily activities and physical movement. Defining disability differs according to legal contexts of different environments and levels of vulnerability. Brazil is one of the heaviest populated countries in the world and is the largest country in South America, with a population of 212.56 million people in 2020. Due to population rates, there is approximately 16 million people in Brazil with a disability. Of this, 9 million of these are of working age, and 1 million are in the labor force.

<span class="mw-page-title-main">Geography of disability</span>

Geography of disability is a multi-disciplinary branch of human geography which studies the experiences of people with disabilities and the extent to which disability in a population can be influenced by its geographical location. Potential components of studies in a geographical analysis include the environment, politics, incidental and additional supports, and the socio-economic landscape of the region being examined. This field has become increasingly important as policymakers have become aware of the need to ensure equal access to community resources for all individuals, regardless of mobility challenges.

Ancient Romans with disabilities were recorded in the personal, medical, and legal writing of the period. While some disabled people were sought as slaves, others with disabilities that are now recognized by modern medicine were not considered disabled. Some disabilities were deemed more acceptable than others, either as honorable characteristics or as traits that increased morality. Small, scattered medical references contain the only direct acknowledgments of disability.

<span class="mw-page-title-main">Impact of the COVID-19 pandemic on people with disabilities</span>

Individuals with disabilities are more susceptible to contracting COVID-19 and have higher mortality rates compared to those without disabilities. This is particularly true for people with intellectual and developmental disabilities, those residing in care facilities, and women with disabilities. Individuals with disabilities face heightened risks of mental health issues related to the pandemic, such as increased feelings of loneliness and isolation. They were also more likely to face domestic violence and abuse during the pandemic. People with disabilities are more likely to experience unemployment as a result of the pandemic and may require changes to the types of accommodations they require for work. Children with disabilities experience complications in their educational programming. Remote learning poses a host of challenges for children with disabilities, including disruptions to physical and occupational therapies and access to assistive technologies.

References

  1. 1 2 3 4 5 6 7 8 9 10 "Chapter - Family Formation: Children with Parents with a Disability". Australian Bureau of Statistics. 2 May 2006. Retrieved 26 March 2019.
  2. 1 2 3 4 5 6 7 8 9 10 11 "Disabled parents: Diversity, experiences, and support needs » The Hub". thehub.sia.govt.nz. Retrieved 2019-03-27.
  3. 1 2 3 4 5 6 7 8 9 10 National Council on Disability (U.S.) (2012). Rocking the cradle : ensuring the rights of parents with disabilities and their children. Washington, DC : National Council on Disability. OCLC   827535859.
  4. 1 2 3 "From Our Perspective: Exploring the Strength and Resilience of Families that Include a Parent with a Disability » The Hub". thehub.sia.govt.nz. Retrieved 2019-05-29.
  5. Coren, Esther; Ramsbotham, Kerry; Gschwandtner, Manfred (13 July 2018). "Parent training interventions for parents with intellectual disability". The Cochrane Database of Systematic Reviews. 2018 (7): CD007987. doi:10.1002/14651858.CD007987.pub3. ISSN   1469-493X. PMC   6513025 . PMID   30004571.
  6. 1 2 Olsen, Richard, 1965- (2003). Parenting and disability : disabled parents' experiences of raising children. Clarke, Harriet. Bristol, UK: Policy Press. ISBN   9781847425683. OCLC   496123288.{{cite book}}: CS1 maint: multiple names: authors list (link) CS1 maint: numeric names: authors list (link)
  7. 1 2 3 4 5 6 7 8 9 10 James, E. (2017). Still Hidden, Still Ignored Who cares for young carers?. [ebook] Barnardo's. Available at: [Accessed 29 May 2019].
  8. Jo., Aldridge (2003). Children caring for parents with mental illness : perspectives of young carers, parents and professionals. Becker, Saul. Bristol: Policy Press. ISBN   9781847425676. OCLC   505869142.
  9. 1 2 Australian Institute of Family Studies. (2017). The Longitudinal Study of Australian Children annual statistical report 2016. Australian Institute of Family Studies. ISBN   9781760161415. OCLC   1002103249.
  10. Olkin, Rhoda; Abrams, Kelley; Preston, Paul; Kirshbaum, Megan (2006). "Comparison of Parents With and Without Disabilities Raising Teens: Information From the NHIS and Two National Surveys". Rehabilitation Psychology. 51 (1): 43–49. doi:10.1037/0090-5550.51.1.43. ISSN   0090-5550.
  11. 1 2 Booth, Tim; Booth, Wendy (February 2000). "Against the Odds: Growing Up With Parents Who Have Learning Difficulties". Mental Retardation. 38 (1): 1–14. doi:10.1352/0047-6765(2000)038<0001:ATOGUW>2.0.CO;2. ISSN   0047-6765. PMID   10703213.
  12. Knudsen, Jenn (2017-08-08). "Are the Children of Parents with Disabilities More Empathic?". Greater Good. Retrieved 2019-03-27.
  13. Grove, C., Reupert, A. E., & Maybery, D. J. (2015). Peer connections as an intervention with children of families where a parent has a mental illness: moving towards an understanding of the processes of change. Children and Youth Services Review, 48, 177 - 185.
  14. "Report: Task Force on Bay Area Parents with Disabilities and Deaf Parents". www.lookingglass.org. Retrieved 2019-05-29.
  15. Flores-Ramos, M.; Méndez Ramírez, I. (January 2011). "FC11-05 - Hormonal profile in depressed and non-depressed perimenopausal women". European Psychiatry. 26: 1874. doi:10.1016/s0924-9338(11)73578-7. ISSN   0924-9338. S2CID   143313189.

See also