Parents of children with disabilities live an incredibly demanding lifestyle that requires constant multitasking. In order to help them manage their lives, other people taking the initiative to advocate for them is essential. The best way to advocate for these parents would be consist of reaching out to state representatives to call for more support for the parents, as well as assisting them to advocate for their children’s educational needs. To help them advocate for their children I would do my part by learning, and then relaying to them the important information about their child’s rights to a Free and Appropriate Public Education (FAPE) under the Individuals with Disabilities Education Act (IDEA). Their child may have rights to more accommodations, and helping their children to receive the proper educational support would substantially relieve the parents’ stress. In addition, I would personally contact my government officials to advocate for better all-around support for these families. Parents of children with disabilities report needing additional financial support and resources to manage their children’s healthcare, education, and overall development. The plan to advocate for these parent’s would help them by supplying with them information to support their children’s educational needs, while speaking out to government officials about the challenges that these parents are facing, and the unmet needs they are living with.
During my experience in talking with families of children with disabilities, I’ve heard about an abundance of adversities and difficulties that these families have to manage and overcome. One of the needs that was consistently mentioned was the need for families to get a break from the stress of their everyday life. According to research, respite care (short-term relief for caregivers) is commonly reported to be the greatest unmet personal need for parents, yet these parents have conflicted attitudes toward leaving their disabled child with someone else to care for them (Whiting, 2014). In addition, parents of sick or disabled children often report the need for socialization with peers who have a shared experience of having a child with special needs (Shilling, Bailey, Logan, & Morris, 2014). In order to better serve these families and parents, I propose the organization of events specifically for these families that will provide them with an opportunity to have fun and socialize with families who have similar struggles. These events will cater to these families and take as much stress off them as possible. The goal is to provide them with the most carefree environment, where they can escape the stress of their daily lives. These events will come at no cost to them, and servant leaders will provide different opportunities as often as possible. Events could potentially consist of amusement parts (as pictures above), sporting events, festivals, or other sorts of social gatherings.
Shilling, V., Bailey, S., Logan, S., & Morris, C. (2015). Peer support for parents of disabled children part 2: How organizational and process factors influenced shared experience in a one-to-one service, a qualitative study. Child: Care, Health & Development, 41(4), 537–546.
Whiting, M. (2014). Support requirements of parents caring for a child with disability and complex health needs. Nursing Children & Young People, 26(4), 24–27.
Parenting is no easy task, and adding illness or disabilities to the equation certainly makes it far more difficult. Parents of children with chronic illnesses and disabilities face a lot of challenges that leave them needing more assistance in more areas than parents of healthy children. The increased needs of the children contribute to the increased needs of the parents in many ways. As I sorted through the research surrounding the needs of these parents, I found that some of the common areas pertained to peer support (Shilling, Bailey, Logan, & Morris, 2014), access to community resources (Diare, Munyon, Carlson, Kimemia, & Mitcham, 2011), mental health support (Singer, Ethridge, & Aldana, 2007), respite care options (Dyches, Christensen, Harper, Mandleco, & Roper, 2016), and advocacy and stigma reduction (Kinnear, Link, Ballan, & Fischbach, 2016). These needs tend to interact, and meeting needs in one area can help meet the needs in others. For example, when parents’ needs are met in areas such as peer support and access to community resources, their mental health needs are reduced because these things have been found to contribute to increased stress and depressive symptoms. Stress and depressive symptoms are commonly found more in parents of sick or disabled children (Singer, Ethridge, & Aldana, 2007), suggesting that these parents need more mental health support. Several interventions have been found to be effective to meet these needs, and respite care and peer support can be helpful in providing parents the available time to receive treatment. Depending on the child and their health concerns, the needs of these parents may be different from one another, but with the proper support, the challenges faced by these parents can be significantly reduced.
References
Bogan, V. L. ., & Fernandez, J. M. . (2017). How children with mental disabilities affect household investment decisions. American Economic Review, 107(5), 536–540.
Hartley, S. L., & Schultz, H. M. (2015). Support needs of fathers and mothers of children and adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(6), 1636–1648.
Miodrag, N., Burke, M., Tanner-Smith, E., & Hodapp, R. M. (2015). Adverse health in parents of children with disabilities and chronic health conditions: A meta-analysis using the parenting stress index’s health sub-domain. Journal Of Intellectual Disability Research: JIDR, 59(3), 257–271.
This picture attempts to point out the essence of the systemic challenges faced by parents of children with disabilities or chronic illness by showing the importance of access to proper resources. Having a sick or disabled child can be very difficult on everyone in the family, and providing proper care and education often comes at a substantial cost. Sick and disabled children will unsurprisingly need a lot more attention in these areas, and parents are often left feeling like their support needs are often going unmet (Hartley & Schultz, 2015). Feelings of inadequate care and education can contribute to problems in other areas of the parents’ lives (Miodrag, Burke, Tanner-Smith, & Hodapp, 2015), suggesting that the wellbeing of parents would be better if their family had access to better resources. Research indicates that many parents feel like their children with special needs and disabilities are not being provided the level of attention and education that they need at school (Kourkoutas, Langher, Vitalaki, & Ricci, 2015). There is education out there that is tailored to children with special needs, but these schools are often difficult for parents to get their children into because of the high costs. Additionally, parents of chronically sick children report that better medical care is available, but not always accessible due to high costs that these parents are often unable to pay (Bogan & Fernandez, 2017). Many parents are forced to make sacrifices in several areas of their lives in order to focus on paying for care and managing the child’s needs, and would be much better off if they had better resources available. The healthcare and education system are not providing enough support to these families, leaving parents to face grave challenges that they should not need to.
References
Daire, A. P., Munyon, M. D., Carlson, R. G., Kimemia, M., & Mitcham, M. (2011). Examining distress of parents of children with and without special needs. Journal of Mental Health Counseling, 33(2), 177–188.
Dyches, T., Christensen, R., Harper, J., Mandleco, B., & Roper, S. (2016). Respite care for single mothers of children with autism spectrum disorders. Journal of Autism & Developmental Disorders, 46(3), 812–824.
Kinnear, S., Link, B., Ballan, M., & Fischbach, R. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism & Developmental Disorders, 46(3), 942–953
Shilling, V., Bailey, S., Logan, S., & Morris, C. (2015). Peer support for parents of disabled children part 2: How organizational and process factors influenced shared experience in a one-to-one service, a qualitative study. Child: Care, Health & Development, 41(4), 537–546.
Singer, G. H. S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: A meta-analysis. Mental Retardation & Developmental Disabilities Research Reviews, 13(4), 357–369.
Singer, G. H. S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: A meta-analysis. Mental Retardation & Developmental Disabilities Research Reviews, 13(4), 357–369.
This article is a meta-analysis that was conducted in order to examine the available research on interventions aimed to reduce depressive symptoms and other forms of psychological distress associated with stress levels in parents of children with developmental disabilities. The meta-analysis identified 17 studies and wanted to find out what type of interventions were available, if they were effective, and if they met APA guidelines to be considered as evidence-based treatments. The literature that was cited within the analysis was all found to be relevant since it was derived from well-known academic search engines. Some of the articles used were a bit outdated, but many of them were substantiated by more recent studies on the same topics. The 17 studies examined in the article were sorted into four categories based on the treatment methods evaluated. The treatment methods evaluated from the studies were behavioral parent training (BPT), cognitive-behavioral treatment (CBT), multiple component treatment (MCT), and family systems intervention (FSI), and measured levels of stress and psychological distress in both mothers and fathers. As a whole, the studies consistently demonstrated benefits and indicated that parents of children with disabilities were responsive to supportive interventions. All of the interventions were found to have some level of short term effectiveness, although long term changes were not consistently measured. Multiple component interventions were found to be the most effective, and the results indicated that both mothers and fathers could benefit from such interventions. This meta-analysis is a great tool for counselors to use when working with parents of children with disabilities because it provides evidence for the utility and effectiveness of multiple different types of interventions that can be tailored to the specific needs of the parents. The only flaws that suggest a necessity for future research on this topic are the sample sizes used in the studies and the potential utility of these interventions with multicultural groups.
Dyches, T., Christensen, R., Harper, J., Mandleco, B., & Roper, S. (2016). Respite care for single mothers of children with autism spectrum disorders. Journal of Autism & Developmental Disorders, 46(3), 812–824.
The premise of the study was to examine the challenges faced by single mothers of children with autism, and to evaluate the impact that respite care had on their mental health. An extensive amount of research literature is introduced throughout the article, but the authors admit that little research on this topic has focused solely on single mothers. Much of the literature used pertains to two parent families, suggesting that the burdens would be much greater on a single parent caring for a child with a disability. The sample used was comprised of 122 surveys of non-cohabiting single mothers of children with who’ve received a diagnosis of ASD. Four measures were used in this study that assessed each mothers’ level of depression, caregiver burden, hassles and uplifts, and several variables of respite care. The results of the study found a positive relationship between the amount of respite care and daily uplifts, and that uplifts were a mediating variable between respite care and depression. The authors found that respite care was received from a combination of sources and did not actually decrease their stress levels or depression. Instead of using the time to relax or care for themselves, the authors found that the mothers appeared to use this time for either working or running errands. This study provides implications for both counselors and policymakers, suggesting that greater policies should be created that provide sufficient care and assistance to single mothers, especially those caring for children with disabilities. These parents are carrying a larger burden than most, and they need be advocated for so that they get the financial support and mental health care that they need in order to improve their well-bring. This article provides a sad realization to the reality of life as a single parent of a child with a disability. As future research is conducted on this rarely studied population, researchers should develop a better study design that has more control over their variables and a larger sample size that is more representative of other races and ethnicities.
Daire, A. P., Munyon, M. D., Carlson, R. G., Kimemia, M., & Mitcham, M. (2011). Examining distress of parents of children with and without special needs. Journal of Mental Health Counseling, 33(2), 177–188.
The purpose of the study was to examine the differences that exist among parents of childrenwith and without special needs, specifically pertaining to levels of individual distress, marital distress, and engagement in community services. Some of the supporting literature used within the article promotes research findings that conflict with the results of the study, but explanations are offered to explain the discrepancies. The conflicting findings do not suggest that the findings are invalid, but rather suggest that a larger study may present more representative results. The sample included 29 participants (15 parents with special needs children and 14 without), and the data was gathered using surveys and inventories that measured marital satisfaction, levels of distress, demographic information, and the types and frequency of community services accessed. In contrast to previous research that indicated that having a child with special needs significantly increased levels of individual and marital stress, this study found no significant differences in stress, but did find an enormous difference in the level of engagement in community services. High levels of engagement in community services seemed to play a role in maintaining reasonable levels of parental stress, but offers insight into other potential concerns. The authors suggest that the extensive time commitments for healthcare visits present opportunities for interventions for parents. Counseling models are suggested to help parents handle the difficulties that come with spending extensive time apart in order to tend to their children’s medical needs and manage the accompanying financial costs. Although it’s concerning that the results of the study differed from several previous research studies that indicated elevated stress levels of parents of children with special needs, the overall considerations and implications suggested by the authors are helpful. Future research with a larger sample size is highly suggested, but the information on community resource engagement and types of support that counselor should offer to parents of special needs children could be very useful.
Kourkoutas, E., Langher, V., Vitalaki, E., & Ricci, M. E. (2015). Working with parents to support their disabled children’s social and school inclusion: An exploratory counseling study. Journal of Infant, Child & Adolescent Psychotherapy, 14(2), 143–157.
This article aims to provide insight to the familial struggles of having a disabled child, and introduces multiple counseling methods that help family members work through the social, mental, and emotional hardships arising from a child’s chronic illness. The research literature used throughout the article is fairly recent and is integrated from a wide range of medical, counseling, and psychotherapeutic sources. The article is an in-depth case study that carefully synthesizes the long-lasting counseling process of a family with a child suffering from a chronic illness, and describes the integrated and eclectic counseling framework used to address the array of problems the family faced. The counseling approaches are discussed for all parties involved and the article shows how much a child’s illness can affect both the child and the parents. The case study concludes with a long list of the essential principles involved in the counseling intervention process of attempting to help a family manage such a difficult lifestyle. This article is essential for understanding the complexities of counseling a family (parents and child) with a child suffering from a chronic illness. No single theoretical orientation or counseling strategy will prepare a counselor to help the family of a chronically ill child, so counselors must be aware of the types of integrative approaches that can help such families. I really enjoyed this article and I think the authors did a great job explaining the rationale behind the counseling model they used, and brilliantly organized the article.
Kinnear, S., Link, B., Ballan, M., & Fischbach, R. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism & Developmental Disorders, 46(3), 942–953
The purpose of this study was to assess the impact of stigma in the lives of parents with children diagnosed with autism spectrum disorder (ASD). The literature cited within the article does a good job of supporting the premise that stigma impacts individuals with ASD and their families in a wide variety of significantly distressing ways. Many sources are incorporated from different time periods, which indicates that this stigma has been experienced in the past as well as the present. The sample included 502 parents who answered questions aimed to assess the impact that stigmatization has had on their lives. Key questions that the study looked to answer were: to what extent do families experience stigma? What are some of the key features of stigma that families experienced? And how do these aspects of stigma contribute to how difficult family caregivers feel it is to raise a child with ASD? Researchers concluded that 95% percent of sample believed that individuals with autism are stigmatized, and the majority of them reported experiencing feelings of isolation and exclusion from friends and family members. The challenges parents faced were found to be associated with the stereotyping that led the isolation and exclusion. Researchers suggest that efforts must be made to increase the public’s understanding and acceptance of children with disabilities in order to decrease the difficulties experienced by both the children and the parents. I think this article, and others like it, are essential in helping reduce the difficulties