Supporting disabled parents and their families: perspectives and recommendations from parents, attorneys, and child welfare professionals

ABSTRACT

While it is well-established that parents with disabilities and their families are over-represented in the child welfare system, no known research has described the parents,’ child welfare professionals,’ and attorneys’ perspectives on the system’s capacity to support them or their recommendations for improvement. This qualitative phenomenological study involved semi-structured interviews with 15 disabled parents, 15 child welfare professionals, and 15 parent attorneys. Respondents agreed that the child welfare system lacks expertise on disability and adequate services for disabled parents, and holds negative attitudes about them. Respondents recommended robust training for professionals on parents with disabilities, and individually-tailored services for disabled parents.

KEYWORDS:

• Child welfare system
• parents with disabilities
• perspectives
• recommendations
• attorneys

Highlights

• Although disabled parents and their families are over-represented in the child welfare system, no known studies have described the parents,’ child welfare professionals’ and attorneys’ perspectives on the system’s capacity to support them or their recommendations for improvement

• Disabled parents, child welfare professionals, and attorneys agreed that the child welfare system lacks both expertise on disability and adequate services for disabled parents

• Parents and professionals recommended more robust training for professionals on parenting with disability, and more individually-tailored services to better meet disabled parents’ needs

Acknowledgments

We gratefully acknowledge the parents, child welfare professionals, and attorneys who shared their insights.

Attorneys

1. Let’s begin by you telling me a little yourself and your job.

2. I would now like to learn about your work with families where a parent or parents have a disability.

   1. What types of disabilities have parents had that you worked with? (Probe for specific disabilities: intellectual, psychiatric, physical, sensory)

   2. Do you currently work with any parents with disabilities? If so, how many? What types of disabilities?

   3. Please describe your practice in terms of parents with disabilities.

      1. Do you represent parents at trial level? Please describe.

      2. Do represent parents in appeals cases? Please describe.

3. Please describe what it is like to work with parents with disabilities.

   1. What are the challenges?

   2. Do you ever have to make any special accommodations for these parents? If so, please describe.

   3. How do you think the child welfare agency treats these parents? Do they provide appropriate supports/services?

4. I would now like to learn about any training you have had related to working with parents with disabilities.

   1. What, if any, training have you had related to working with parents with disabilities? How often do you receive this training? Who provides the training? Is it mandated? Is that sufficient? What topics are covered?

   2. Is there anything more you wish you could be trained on related to working with parents with disabilities?

5. Let’s now discuss the Americans with Disabilities Act (ADA). Have you ever used the ADA in a case?

   1. (If yes) What was your experience? How did you use it? Was it successful? Please describe any challenges you had. What types of disabilities were involved? How did the agency respond? How did the judge respond? What was the outcome? Was this a termination of parental rights case? Did you raise the ADA prior to trial?

   2. (If not) Why not?

   3. How does the ADA impact your work?

   4. Where would you go if you wanted to learn about the ADA or use it in a case?

   5. Do you feel you are adequately prepared to effectively use the ADA in your cases? Why or why not?

6. Do you think child welfare agencies comply with the ADA? Please describe.

   1. Do you think they understand their legal obligations? Please describe.

7. Do you think judges understand how the ADA applies in these cases? Please describe.

8. Research indicates that judges sometimes refuse to apply the ADA in these cases? Do you think this is true? If so, why do you think this is?

9. Have you seen the guidance on the ADA for child welfare agencies and courts that the US Department of Justice and US Department of Health and Human Services recently issued?

   1. Please describe your understanding of the guidance?

   2. What are your thoughts on it?

   3. How did you hear about it?

   4. Did it prompt any changes in your practice? If so, please describe.

10. Do you think the ADA is useful in these cases? Is it enough?

11. Research suggests that parents with disabilities are involved with the child welfare system at high rates. Why do you think that is?

12. How, if at all, do you think the child welfare system could be improved to work with these families?

13. What resources, supports, or training do you wish you had that could make your job easier when working with these families?

14. Is there anything else you think I should know that is relevant to this study?

Parents

1. Let’s begin by you telling me a little yourself and your family.

   1. With whom do you live?

   2. How many children do you have? What are their ages? Do any of them have disabilities?

   3. Does your spouse have a disability?

2. Now, I’d like to learn about your disability or health condition.

   1. What condition caused your disability? How would you describe your disability to others?

   2. When did you first get your disability (for non-congenital conditions)?

   3. Approximately how old were you when you acquired your disability?

   4. Has your disability impacted your day-to-day life including your basic activities like eating, bathing, toileting, etc.? If so, how?

   5. Do you have a personal care attendant or home health aide? So how many hours of care a week do you get? How is it paid? Is it paid by insurance? Do you have other people (informal care) help you with your daily activities?

   6. Do you receive any other disability-specific services?

3. I would now like to learn about your involvement with the child welfare system.

   1. How many times have you been involved with the child welfare system? (ask probes about each encounter)

   2. Please explain your involvement with the child welfare system. When did you first become involved? Why did you become involved? Did you contact the child welfare agency or were you reported by someone? Who reported you and do you know why?

   3. Once you were involved, what happened throughout (discuss each stage from referral to closure of case)?

   4. What was the outcome of your case(s)? What are your thoughts about the outcome?

4. I would like to now discuss what services, if any, you received from the child welfare system.

   1. What services or supports did you receive? Did you request them or will they automatically provided? Did the child welfare system suggest them?

   2. Were the supports and services helpful? Why or why not?

   3. What else would have been helpful?

   4. Did you ask for any services or supports that were not provided? Why were they not provided?

5. Please describe your understanding of how the Americans with Disabilities Act (ADA) applies to the child welfare system.

   1. Did you know that it applies? Explain.

   2. If you knew, how did you learn?

   3. Is there anything you wish you knew about the ADA?

   4. Did you make any requests for reasonable accommodations? If so, please explain.

   5. Was the ADA ever mentioned by the child welfare system by you, the child welfare system, an attorney, or advocate? Please explain.

   6. Do you think the ADA helped you? Why or why not?

   7. Some courts and agencies do not believe the ADA applies to parents with disabilities involved with the child welfare system. Does this surprise you? Why or why not?

6. (If that parent’s rights were terminated i.e., they lost custody of their child(ren)) I would like to talk a little about your experience having your parental rights were terminated.

   1. Can you please describe what happened?

   2. Did you go to court? How was that?

   3. Did you have an attorney? Do you think they helped you? Why or why not? What did your attorney do for you? Did they know about your disability? How do you know?

   4. Did the judge or child welfare agency talk about your disability? What did they say? How did this make you feel?

   5. Did you ask for any reasonable accommodations for the court? Please explain. Were you provided them? Why or why not?

7. How do you think the child welfare system treats parents with disabilities and their families? Please provide examples.

   1. Do you think the child welfare system knows how to work with parents with disabilities? Why or why not?

8. Did anyone evaluate you to assess whether you could safely care for your child(ren)?

   1. Please explain what happened? What was the process? Where was the assessment conducted?

   2. Who suggested the assessment?

   3. How did the assessment make you feel?

   4. Was the assessment accessible to you? Why or why not? Were any modifications or adaptions made? Please explain.

   5. Do you think the assessment accurately reflected your abilities? Why or why not?

9. Please tell me about your overall perspectives of the child welfare system. This can include agency staff or court staff.

   1. Do you feel they knew how to support your disability-related needs? Why or why not?

   2. Do you feel you were treated differently because of your disability? Why or why not?

10. Do you feel you understood your legal rights as they relate to the child welfare system? Why or why not? How did you learn them?

11. How, if at all, do you think the child welfare system could be improved to work with parents with disabilities and their families?

12. What resources or supports do you wish you had that could have made your experiences better?

13. Is there anything else you think I should know that is relevant to this study?

Notes

1. This article uses “person-first” (i.e., parents with disabilities) and “identity-first” (i.e., disabled parents) language interchangeably. This approach is consistent with a growing trend toward identity-first language (Andrews et al., 2019), which the American Psychological Association (APA) recognized in its latest style guidelines (American Psychological Association [APA], 2020).

Additional information

Funding

Funding for this study was provided by the Brandeis University Office of the Provost, the US Department of Health and Human Services, National Institute on Disability, Independent Living, and Rehabilitation Research (Award Number: 90DPGE0001), and the Lurie Institute for Disability Policy, Heller School for Social Policy and Management, Brandeis University. The opinions and conclusions are solely mine and should not be construed as representing the sponsor.

Notes on contributors

Sasha M. Albert

Sasha M. Albert, MSc, is a doctoral candidate in Health Policy at the Heller School of Brandeis University. She studies pregnancy, parenting, contraception, and abortion, and teaches about the US health system. She received her MSc in Sociology (Gender & Sexuality Studies) from the Universiteit van Amsterdam, and her BA in History from Vassar College. Her research focuses on reproductive health and rights, state-level policy change, and access to and provision of reproductive health services.

Robyn M. Powell

Robyn M. Powell, MA, JD, is a Research Associate at the Lurie Institute for Disability Policy at Brandeis University. As a disabled woman, her research interests include disability law and policy, particularly the needs, experiences, and rights of parents with disabilities and their families. She received her BS in social work from Bridgewater State University, her JD from Suffolk University Law School, and her MA in social policy from Brandeis University.