National Research Center for Parents with Disabilities

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.

 

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.

Lea este boletín en español.

Spotlights

We are thrilled to share that we received a new grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DPCP0012)! This grant will fund our activities for the next five years! This grant will be led by Dr. Monika Mitra, Principal Investigator, and Dr. Linda Long-Bellil, Co-Principal Investigator. As we transition to the new grant, we would like to welcome new and returning members to our Advisory Board:
  • Heather Watkins,
  • Jennifer Senda,
  • Judith Brown,
  • Julie Petty,
  • Keith Jones,
  • Laura Stout,
  • Morenike Giwa-Onaiwu,
  • Nicole Lomerson,
  • Patrick Cokley,
  • Tana Pradia, and
  • Earl Allen.
We’d also like to extend tremendous gratitude to our previous Board members:
  • Denise Simon,
  • John Pirone,
  • Julie Kegley,
  • Kevin Irvine,
  • Melinda Haus,
  • Tammy Rayess, and
  • Maureen Martowska.
Thank you for your guidance and insight!

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.
These researchers represent Canada, Israel, Australia, The Netherlands, and South Africa. Please be on the lookout for exciting new updates about this initiative!

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

Read our newest blog post! Valerie is a mother with a disability and she shared her story via her blog post entitled “My Pain Made Me Multidimensional.” Are you a parent with a disability who would like to share your story? We want to hear from you!

Community Blog
Call for Submissions

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 Rochester Institute of Technology, the University of Massachusetts, Gallaudet University, the University of Cincinnati, Arizona State University, and the University of Michigan. Through research expertise and first-hand experience, we create comprehensive resources 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.”

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?

Community Blog

Call for Submissions

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.

Interactive Map

Summary of State Legislation

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.”