Newsletter
Welcome to our newsletter, where the National Research Center for Parents with Disabilities will share research-informed updates for parents with disabilities and professionals who work with parents with disabilities.
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January 2023 Annual Newsletter
Welcome
Welcome to our annual newsletter, where the National Research Center for Parents with Disabilities shares research-informed updates for parents and prospective parents with disabilities and their families as well as professionals who work with parents with disabilities. We are delighted to share some of our highlights from 2022.
Featured Work
In 2022, we released our updated Compendium of Data Sources for Parents with Disabilities in the United States!
This compendium lists 17 national data sets that include indicators of both disability and parental status, so that researchers can investigate questions related to the prevalence and life circumstances of disabled parents, including parents from racial and ethnic minorities.
This research will ultimately inform targeted interventions to reduce and/or eliminate disparities. Versions are also available in Spanish and plain language.
Spotlights
The group met twice during 2022 and is composed of leading international researchers on parenting with diverse disabilities, who are committed to a cross-cultural exchange of ideas and best practices. Members include: Dr. Marjorie Aunos, Dr. Karin van Doesum, Dr. Margaret Spencer, Dr. Carmit-Noa Shpigelman, Dr. Nomfundo Moroe, Dr. Gwynnyth Llewellyn, Dr. Helen Leonard, Dr. Gabrielle Hindmarsh, Dr. Maurice Feldman, and Dr. Susan Collings. These researchers represent Canada, Israel, Australia, The Netherlands, South Africa. Please be on the lookout for exciting new updates about this initiative!
Research Highlights
We are happy to share our article called “Ableism in the child welfare system: Findings from a qualitative study,” published in Social Work Research. This article describes interviews with parents with disabilities, child welfare workers, and attorneys who represent parents. Participants described different levels of ableism within the child welfare system including internalized, interpersonal, institutional, and structural ableism. For example, participants described how federally mandated timelines for reunification disadvantage parents with disabilities. The authors note that interventions to reduce ableism should address each level of observed ableism. Check back soon for a research brief with these findings on our website.
In January of 2022, we published a paper called “Recurrence of substantiated maltreatment reports between low-income parents with disabilities and their propensity-score matched sample without disabilities” in Child Maltreatment. This article shows that parental disability did not increase risk for having repeated substantiated allegations of child maltreatment, after accounting for other factors and highlights the complex relationships between poverty, race, disability, and child welfare involvement. A research brief with key findings is available on our website.
Our ParentingWell Project provides an approach for behavioral health practitioners that makes talking about parenting, children, and family experiences a natural part of the conversation during an adult’s recovery process.
This year we published an article about the process of adapting an intervention developed in Finland (Let’s Talk about Children) into the ParentingWell Approach for use within the United States adult mental health service system. Check out the article published in Frontiers in Psychiatry! This article is also described in a research brief on our website.
Community Perspectives
Read our newest blog post! Luanjiao Aggie Hu is a new mother with a physical disability and she writes about her pregnancy experiences as an immigrant and an expectant mother with a physical disability, with the hope that her story can be useful to others who are having similar journeys.
Are you a parent with a disability who would like to share your story? We want to hear from you! Our current featured blog topic is Your Hopes and Resolutions for the New Year. You are welcome to submit a blog post on this or another topic.
Webinars
Our free webinars offer information about parenting with a disability, from parents with lived experience and the professionals who support them.
Our next webinar is Disabled Parenting within Multigenerational Families, on January 31, 2023. Multigenerational households are defined as three generations or more, living together. Common throughout time, and across different cultures, the number of multigenerational family households in the US has been on the rise since the Covid-19 pandemic. In this webinar we will explore the experiences of disabled parents living within multigenerational households. Our two parent panelists, Judith Brown and Jennifer Senda, will share the successes and challenges they experienced while living in multigenerational households with their children.
In March of 2022, we hosted a webinar entitled Black, Disabled, Deaf, and Proud. Panelists included Advisory Board members Heather Watkins, Morénike Giwa-Onaiwu, and Earl Allen. The panelists each discussed the pride that they feel in their parenting roles, and how they are raising their children to embrace each of their identities.
Download the webinar recap.
In June of 2022, we provided a webinar on disabled parents in the neonatal intensive care unit (NICU).
Two disabled parents (Kristie Lewis and Patrick Cokley) described their experiences after their babies were born prematurely and were admitted to the NICU. They shared challenges and successes they encountered, and their experiences interacting with providers who may have conveyed ableism and bias. The faculty speaker, Dr. Paige Church of Sunnybrook Hospital in Toronto, Ontario spike about how we can better serve families with disabled parents during this vulnerable time.
Would you like to view one of these webinars? Recordings of all of our webinars are available here.
About Us
January 2022 Annual Newsletter
Welcome
Welcome to our annual newsletter, where the National Research Center for Parents with Disabilities shares research-informed updates for parents with disabilities and professionals who work with parents with disabilities. We had an exciting 2021 and are delighted to share some highlights with you.
Spotlights
- Heather Watkins,
- Jennifer Senda,
- Judith Brown,
- Julie Petty,
- Keith Jones,
- Laura Stout,
- Morenike Giwa-Onaiwu,
- Nicole Lomerson,
- Patrick Cokley,
- Tana Pradia, and
- Earl Allen.
- Denise Simon,
- John Pirone,
- Julie Kegley,
- Kevin Irvine,
- Melinda Haus,
- Tammy Rayess, and
- Maureen Martowska.
This new grant will also include a brand new International Consortium of Research on Parents and Parenting with Disabilities. Members include:
- Dr. Marjorie Aunos,
- Dr. Karin van Doesum,
- Dr. Margaret Spencer,
- Dr. Carmit-Noa Shpigelman,
- Dr. Nomfundo Moroe,
- Dr. Gwynnyth Llewellyn,
- Dr. Helen Leonard,
- Dr. Gabrielle Hindmarsh,
- Dr. Maurice Feldman, and
- Dr. Susan Collings.
Research and Information
We are happy to share our newest article called “Barriers and Solutions to Passing State Legislation to Protect the Rights of Parents with Disabilities: Lessons from Interviews with Advocates, Attorneys, and Legislators.”
This article describes interviews with advocates, attorneys, and legislators about (1) the obstacles they face when trying to pass laws that protect the rights of parents with disabilities, and (2) solutions that have helped them to pass laws that protect parents with disabilities and their children. The article was published in the Journal of Disability Policy Studies, and a research brief is available on our website.
This past year the National Research Center for Parents with Disabilities has been pleased to offer a range of events and publications devoted to disabled parents and their families. In the upcoming year, we look forward to exciting work and events on both new and ongoing issues and projects, in collaboration with our partners and the community. To learn about all of our activities, please visit our website.
In July of 2021 we published a paper on the parent-centered planning intervention, which aims to enhance supports for parenting for parents with disabilities. The paper is entitled “Enhancing Supports for Parents with Disabilities: A Qualitative Inquiry into Parent Centered Planning” and it was published in the Journal of Family Social Work. The study found that nearly all parents participating in the intervention strengthened relationships during the process of participation, clarified their goals related to parenting, and made progress toward their identified goals.In 2021 we also published an article titled “Birth Intentions among US Fathers with Disabilities.” This study examined disparities in birth intendedness among fathers with and without disabilities and explored whether the differences vary by marital status or race/ethnicity. Researchers found that fathers with disabilities were almost two times (1.89) as likely to report their last birth as unwanted versus intended compared to those without disabilities. You can find the article in the Disability and Health Journal, and it is discussed in this research brief on our website. Our ParentingWell Project provides an approach for behavioral health practitioners that makes talking about parenting, children, and family experiences a natural part of the conversation during an adult’s recovery process. This year we published an article about the feasibility and impact of supporting practitioners in Massachusetts to use ParentingWell via the ParentingWell Learning Collaborative. Check out the article published in the Community Mental Health Journal!
Webinars
Our free online webinars offer information about parenting with a disability, from parents with lived experience and the professionals who support them.
In June of 2021, we hosted a virtual State-of-the-Science Conference on current research and future directions for parents with disabilities and their families. The three-webinar series included the following topics:
- Peers have much to offer parents: Leveraging the benefits of lived experience;
- Reimagining a child welfare system that works for parents with disabilities and their families;
- Reflections from Advisory Board Members on the State of the Science.
You can find recordings of the State-of-the-Science webinars here.
Other webinar topics in 2021 included: "Coping with COVID-19: Parenting with a Disability during a Pandemic" and "The Role of Disabled and Deaf Fathers in the Family."
Would you like to view one of these webinars? Recordings of all of our webinars are available here.
Blog
Community Blog
Call for Submissions
About Us
March 2020 Newsletter
This month, our updates include two new articles on the legal and healthcare needs of parents with disabilities, a new entry on our Community Blog, updates about state legislation, our next webinar, and our updated Spanish website.
Research
Legal Needs of Parents with Psychiatric Disabilities
We are excited to share our newest publication, “Responding to the Legal Needs of Parents with Psychiatric Disabilities: Insights from Parents' Interviews.” Our researchers interviewed twelve former clients of a legal services program in Massachusetts that provides representation to clients
with disabilities. From the interviews, researchers identified the following themes: Clients with psychiatric disabilities reported that the legal profession lacks an understanding of mental health; they suggested that attorneys should provide parents with psychiatric disabilities services beyond litigation, including assistance with administrative tasks; and they shared that they may have ongoing legal needs, beyond those related to the child welfare system. These findings contain important implications for the legal profession. The article appeared in Law & Inequality: A Journal of Theory and Practice.
Health Disparities among Parents with Disabilities
In October of 2019, the National Research Center for Parents with Disabilities published an article entitled “Do disability, parenthood, and gender matter for health disparities?: A US population-based study.” Researchers analyzed data from more than 40,000 US parents and nonparents with and without disabilities. They found that parents with disabilities are at especially high risk of reporting frequent physical distress, smoking, and lack of sleep. They are also more likely to report higher Body Mass Index (BMI) scores. This article was published in the Disability and Health Journal, and suggests the need for policies and programs to address health related needs of parents with disabilities.
Blog
Check out our newest blog! Heather MacMurray is a mother with MS and she wrote the blog for this quarter, entitled “It’s Hard But It’s Worth It.” Are you a parent with a disability who would like to share your story?
Legislation Map
More than 25 states have introduced or passed legislation providing support for parents with disabilities. Our interactive map offers legislation summaries, status, disability types covered, and links to the full bills.
Recent updates include…
In 2019, Alabama passed House Bill 24, mandating that a parent’s blindness cannot be used to prevent visitation or custody in child welfare cases.
The Indiana Senate is currently considering a bill (Senate Bill 312) which would provide that the rights of a person with a disability to parent the person’s child may not be denied or restricted solely because the person has a disability.
Spotlight
Did you know that we now have Spanish and English versions of our website? To access all of our resources in Spanish, visit the brand new Spanish website for the National Research Center for Parents with Disabilities.
About Us
The National Research Center for Parents with Disabilities is a collaborative research and advocacy project supporting parents with disabilities. Housed at the Lurie Institute for Disability Policy at Brandeis University’s Heller School, we collaborate with other institutions such as Northeastern University, University of Minnesota, and University of Michigan. Through research expertise and first-hand experience, we create a comprehensive resource for disabled parents, family members, clinicians, and policymakers Our advisory board is composed of parents with disabilities or their family members, and we are guided by the principle, “Nothing about us without us.”