Tag: Parents with Disability

PATHS: Providing Accessible Training and Home Support for Parents with Intellectual Disabilities in Arizona

There are limited formal supports available to individuals with intellectual disabilities (ID) when they become parents. In addition, parents with ID and their children experience a higher risk of negative outcomes in health, development, and child welfare involvement. Evidence-based home visiting programs (EBHV) support parents and children in their homes while utilizing an evidenced-based curriculum to help families meet the developmental and health needs of their young children. According to West & Dibble, 2022, “There is strong theoretical support for EBHV as a strategy to help address the needs of parents with ID.” Since the passing of the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) legislation in 2010 under the Affordable Care Act, the presence and availability of evidenced-based home visiting programs has increased. These programs are widely available to parents across the state of Arizona. Unfortunately, there have been few studies that have examined the ability of evidence-based home visiting programs and the competency of their staff to appropriately implement support services to parents with ID. PATHS aims to bridge the gap in order to optimize the support services being offered by home visitors of parents with ID in the state of Arizona through supplemental materials and trainings.

Key Learning Outcomes

1. Participants will gain an understanding of the general disparities found in research and practice of supporting parents with intellectual disabilities
2. Participants will learn about the PATHS project, its history, and its role in helping evidenced-based home visiting programs (EBHV) meet the needs of parents with intellectual disabilities. The future of PATHS will also be discussed.
3. Participants will be introduced to the supplemental and training materials created by PATHS to support EBHV programs meeting the needs of parents with ID.

Parent Panel: Lived Experiences Parenting with Disabilities

Individuals with disabilities have long been excluded from parenting literature, due to antiquated beliefs of their universal unfitness to raise children. Recent literature, though, suggests that women with disabilities experience pregnancy at the same rate as women without disabilities (Horner-Johnson et al., 2017). Parents with disabilities also report struggles accessing support services (Mitra et al., 2016). Directing research activity and disability expertise toward strengthening social supports for parents with disabilities was called for to reduce disparities. The Arizona Developmental Disabilities Planning Council (ADDPC) has funded three projects to investigate differing topics within the area of parenting with disabilities, focusing on how social workers and home visitors can bridge this gap of support for parents with disabilities.

Horner-Johnson W, Darney B, Kulkarni-Rajasekhara S, Quigley B, Caughey A. Pregnancy among US women: differences by presence, type, and complexity of disability. Am J Obstet Gynecol. 2016;214(4):529e1-529e9.

Mitra M, Long-Bellil L, Iezzoni L, Smeltzer S, Smith L. Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disabil Health J. 2016;9(3):457-463. doi:10.1016/j.dhjo.2015.12.00

Key Learning Outcomes

1) Understand some of the positive things about being a parent with a disability and the different perspectives being a parent provides
2) Understand how parents with disabilities can parent with appropriate supports
3) Leave with a wider knowledge of the barriers parents with disabilities face

Bridging the Gaps: Developing resources and curricula for parents with disabilities and health care professionals

Disability Studies has long noted that disabled persons are not often considered capable of sexual activity or even interested in sexuality. When they are, they are stereotyped as sexually deviant or at risk of sexual abuse, not as engaging in healthy sexual relationships (Pebdani & Tashijan, 2021). They are rarely thought of as potential parents (Friedman, 2022). They are not represented in sexual education materials taught in public education or information on pregnancy and childhood provided to young adults (Giles, Juando-Prats, McPherson, & Gesink, 2022). Information on the needs and desires of disabled persons carrying pregnancies to term and raising healthy children is sparse; several scoping reviews have noted this as a clear need for disabled persons (Pebedani & Tashijan, 2021).

Medical education often involves the diagnosis of DD but does not always include the care of people with DD. It also rarely involves the individualized care that many people with DD need; this is especially true for family planning and maternity care (Thompson, Stancliffe, Broom & Wilson, 2014). There is a need within the disability community for resources and assistance in making pregnancy-related choices, receiving accessible and responsive medical care, and obtaining the assistance and supports essential for parenting.

Key Learning Outcomes

Attendees at this session will be able to
1. Describe some of the barriers, gaps and needs related to pregnancy and parenting with a disability in AZ.
2. Learn about new resources and curricula developed to address needs and gaps related to parenting with a disability in AZ.
3. Learn about on-going collaborative efforts to support parents with disabilities.

Working with Parents with Disabilities: An Overview for Social Workers and Social Service Providers

There has been growing global attention to parents with disabilities, with the recognition that parents with all sorts of disabilities regularly have and raise children. In the last several decades, researchers have studied a variety of issues related to parenting with a disability, including the overall prevalence of parents with disabilities (Man et al., 2017), parental support needs of parents with disabilities (Tarleton & Ward, 2007), parenting training programs geared towards parents with disabilities (Coren et al., 2011), services and supports for parents (West & Dibble, 2022), outcomes of children of parents with disabilities (Collings & Llewellyn, 2012), maternal and obstetric health for people with disabilities (Parish et al., 2015), and the overall experiences of parenting with disability (Moghadam 2017). The lead presenter of this session completed the original research that led to the National Council on Disability’s “Rocking the Cradle” report which highlighted the needs of parents with disabilities in the US (Lightfoot el al, 2010), as well as studies on parental support for parents with disabilities (e.g. Lightfoot & LaLiberte, 2010; Lightfoot et al 2018), and the intersections of parents with disabilities in the child protection system (e.g. Lightfoot & DeZelar, 2016, DeZelar & Lightfoot, 2020).

Key Learning Outcomes

1) Attendees will understand the current and historical context related to parenting with a disability in the United States, including eugenics laws, state laws that have parental disability as a grounds for termination of parental rights, and the current overrepresentation of parents with disabilities in the child protection system.

2) Attendees will be familiar with a variety of new models for working with parents with disabilities, including parent training, parent centered planning, and peer navigator models.

3) Attendees will be familiar with best practices for social workers and social service providers in supporting parents with disabilities.

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