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.

Introduction

People with disabilities – including intellectual, developmental, psychiatric, sensory, and physical disabilities – are as likely as nondisabled people to be parents (Horner-Johnson, Darney, Kulkarni-Rajasekhara, Quigley, & Caughey, 2016; Kaplan, Brusilovskiy, O’Shea, & Salzer, 2019; National Council on Disability [NCD], 2012). Although prevalence estimates vary by data source, current estimates indicate that approximately 5% to 10% of US parents are disabled (Kaye, 2012; Li, Parish, Mitra, & Nicholson, 2017; Sonik, Parish, Mitra, & Nicholson, 2018). A sizable body of research has found parents with disabilities and their families often have adverse experience related to the child welfare system (e.g., Kaplan et al., 2019; Lightfoot & DeZelar, 2016; McConnell, Feldman, Aunos, & Prasad, 2011; Slayter & Jensen, 2019).

Parents with disabilities are more likely than nondisabled parents to have child welfare system involvement (Booth, Booth, & McConnell, 2005; Kaplan et al., 2019; LaLiberte, Piescher, Mickelson, & Lee, 2016; Lightfoot & DeZelar, 2016; Llewellyn, McConnell, & Ferronato, 2003; McConnell et al., 2011). Studies have also found disabled parents,¹ especially intellectual or psychiatric disabilities, have high rates of termination of parental rights (e.g., Booth et al., 2005; Callow, Tahir, & Feldman, 2016; Feldman, Case, & Sparks, 1992; LaLiberte et al., 2016; Lightfoot & DeZelar, 2016; Llewellyn et al., 2003). Children of parents with intellectual or psychiatric disabilities have higher out-of-home placement than other children (Booth et al., 2005; International Association for the Scientific Study of Intellectual and Developmental Disabilities, Special Interest Research Group [IASSIDD SIRG], 2008; Joseph, Joshi, Lewin, & Abrams, 1999; Kaplan et al., 2019; LaLiberte et al., 2016; Llewellyn et al., 2003).

Other disparities persist for disabled parents and their families involved with the child welfare system, such as the provision of adequate family preservation or reunification services (IASSIDD SIRG, 2008; Lightfoot, LaLiberte, & Minhae, 2017; Powell & Nicholson, 2019; Slayter & Jensen, 2019). Parents with disabilities often contend with the perception that they are unable to care for their children, which can lead child welfare agencies and courts to assume that disabled parents will not be able to benefit from services (Kirshbaum & Olkin, 2002; Powell, 2017; Wade, Llewellyn, & Matthews, 2008). Parents with disabilities and their families also face a system that has limited understanding about them. Indeed, past studies have found child welfare professionals and attorneys often lack training and information about working with parents with disabilities and their families (Azar, Maggi, & Proctor, 2013; Breeden, Olkin, & Taube, 2008; Kay, 2009; LaLiberte & Lightfoot, 2013; Tarleton, 2015). To adequately support these families, child welfare professionals should understand adaptive parenting strategies, parenting assessments, disability supports, evidence-based practices, and disability rights laws (Azar & Read, 2009; Lightfoot et al., 2017).

The over-representation of disabled parents and their families within the child welfare system may be attributable to the risk factors these families experience. For example, parents with disabilities have high rates of poverty, lower educational attainment, and greater reliance on government benefits (Kaye, 2012; Li et al., 2017; Sonik et al., 2018), all factors that have been associated with child welfare system involvement (Courtney, Dworsky, Piliavin, & Zinn, 2005; Dettlaff et al., 2011; Drake & Jonson-Reid, 2014; Eckenrode, Smith, McCarthy, & Dineen, 2014; Hook, Romich, Lee, Marcenko, & Kang, 2016). Further, parents with disabilities often have increased involvement with service providers, and this exposure, also known as surveillance bias (Chaffin & Bard, 2006), makes families more vulnerable to child welfare system referrals. Finally, social isolation is a common challenge for parents with disabilities (Azar & Read, 2009; DeZelar & Lightfoot, 2019; Lightfoot, LaLiberte, & Minhae, 2018; Llewellyn & Hindmarsh, 2015), and limited social supports have been linked to child welfare system involvement (Cameron, 2002; Fong, 2017; Ortega, 2002; Rajendran, Smith, & Videka, 2015; Stith, Liu, Davies, Boykin, Alder, Harris, Som, McPherson, & Dees, 2009).

Although it is well-established that disabled parents and their families are over-represented in the child welfare system and experience several disparities once involved, existing research has limitations. Few studies have included the perspectives of these parents nor have they sought parents’ input about improving the child welfare system. Additionally, no known studies have explored the experiences of attorneys who represent disabled parents involved with the child welfare system. Further, existing studies have primarily been disability-specific, focused mostly on parents with intellectual or psychiatric disabilities, although emerging research suggests parents involved with the child welfare system often have co-existing disabilities (Lightfoot et al., 2018; Slayter & Jensen, 2019). Hence, research should follow a cross-disability approach (Krahn, Putnam, Drum, & Powers, 2006). This study will begin to fill these gaps.

The aim of this qualitative phenomenological study (Creswell, 2013; Patton, 2002) is to describe the perspectives of parents, child welfare professionals, and attorneys, as well as their recommendations for increasing the child welfare system’s capacity to support disabled parents and their families. We addressed two primary research questions: (1) How do parents with disabilities, child welfare professionals, and attorneys perceive the child welfare system’s capacity to support disabled parents and their families? and (2) What are parents’ and professionals’ recommendations for improving the child welfare system’s capacity to work with parents with disabilities and their families?

Materials and methods

This investigation is part of a larger qualitative phenomenological study examining the experiences of parents with disabilities involved with the child welfare system. The authors’ university Institutional Review Board (IRB) approved this study.

Sample

This study included three groups of interview participants: parents with disabilities, child welfare professionals, and attorneys who represent parents. For parents, eligibility criteria included: (1) identifying as a parent with a disability; (2) involvement with the United States child welfare system within the past 5 years; and (3) being 18 years of age or older. For child welfare professionals and attorneys, eligibility criteria included: (1) a minimum of two years of experience working in the child welfare system; (2) experience working with at least three families that included disabled parents within the past five years; (3) currently working within the child welfare system; and (4) being 18 years of age or older. The sample included participants from across the US.

Convenience and snowball sampling were used to recruit participants (Hsieh & Shannon, 2005; Patton, 2002). Specifically, we disseminated recruitment materials via social media and national and state child welfare and disability services organizations. Participants were recruited via social media, and by having national disability law and state child welfare organizations disseminate recruitment flyers to their members. Participants were also asked to recommend other participants.

One-hundred and seven parents and professionals expressed interest in participating in the study. Subsequently, 17 parents and 10 child welfare professionals or attorneys were screened out as ineligible, 33 individuals were unable to be reached for screening, and two child welfare professionals were interviewed but later excluded because one interview revealed that an individual did not meet eligibility criteria and there was a technical issue with the recording equipment during another. The final analytic sample included 45 participants: 15 parents, 15 child welfare professionals, and 15 attorneys.

Data collection

Participants were emailed an informed consent document prior to their scheduled interview, which they had to sign and return prior to their interview. Between January and June 2019, two trained interviewers conducted semi-structured telephone interviews in English. Interviews followed interview guides that were developed based on a comprehensive literature review (Appendix A). Following the interviews, participants were emailed a demographic form to complete, and sent a 15 USD gift card to thank them for their participation Each interview was audio-recorded and professionally transcribed. Recruitment of at least 15 participants from each group was planned, as saturation of themes would be expected at this sample size (Guest, Bunce, & Johnson, 2006).

Analysis

Interview transcripts were iteratively and inductively analyzed using traditional content analysis procedures (Hsieh & Shannon, 2005; Sandelowski, 2000, 2010). First, each author reviewed three randomly-selected interview transcripts, conducted line-by-line, in-depth analysis, and developed a preliminary set of codes. The authors then met and developed an initial codebook, reconciling discrepancies in preliminary codes.

Interview transcripts were uploaded to the Dedoose Version 8.2.14 web application for qualitative analysis (SocioCultural Research Consultants, 2019). The first author completed line-by-line coding in Dedoose with the codebook, and the research team regularly met to discuss and refine codes. Once coding was complete, the second author reviewed the coding. Any disagreement in coding was discussed until consensus was reached (Harry, Sturges, & Klingner, 2005; Saldaña, 2016). The final codebook, which was approved by both authors, included themes and codes as well as definitions.

Results

Participant characteristics

Parents

Table 1 presents the parents’ characteristics. Most parents were mothers, between 36 and 45 years old, White, heterosexual, and married or partnered. Over one-third of the parents were unemployed and had attended some college. The majority of parents had annual household incomes below 25,000 USD and most received Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). Geographically, parents were evenly distributed among three US Census regions: Northeast, Southeast, and West. Parents reported a range of disabilities, including traumatic brain injury, cerebral palsy, post-traumatic stress disorder, depression, anxiety, and chronic illness.

Table 1.

Parents′ demographic characteristics (N = 15).

Characteristics	N (%)
Age (years)a
26–35	2 (14)
36–45	8 (57)
46–50	4 (29)
Race/ethnicity
White/Caucasian	10 (67)
Other	1 (7)
Multiracial	4 (27)
Sexual orientationa
Heterosexual	11 (79)
LGBTQ	3 (21)
Relationship statusa
Single	5 (36)
Married or partnered	9 (64)
Parenting role
Mother	12 (80)
Father	3 (20)
Census regiona
Northeast	5 (36)
Southeast	5 (36)
West	4 (29)
Employment statusa, b
Employed	7 (47)
Not Employed	8 (53)
Highest level of educationa
Did not complete high school	1 (8)
High school or GED	2 (15)
Some college or college degree	8 (57)
Master’s degree or beyond	2 (15)
Household incomea
Less than $25,000	8 (62)
$25,000 to $74,999	4 (31)
$200,000 or more	1 (8)
Government benefits receiveda, b
SSI/SSDI	11 (85)
SNAP/Food Stamps	4 (31)
Number of children
1	4 (27)
2–3	6 (40)
4–5	5 (33)
Youngest child’s ages (years)a
1–4	5 (36)
5–9	6 (43)
10–12	2 (14)
16–18	1 (7)
Number of children who live with parenta
0	2 (13)
1	9 (60)
2	2 (13)
3	1 (7)

SSI = Supplemental Security Income; SSDI = Social Security Disability Insurance; SNAP = Supplemental Nutrition Assistance Program.

^aMissing data due to nonresponse.

^bCategories are not mutually exclusive.

Parents had between one and five children, with the majority having two or more children. Over half of the children were six years of age or younger. More than half of the parents only had one child living at home at the time of the interview.

Child welfare professionals and attorneys

Table 2 presents the child welfare professionals’ and attorneys’ characteristics. Most child welfare professionals and attorneys were White and female. Over two-thirds of the child welfare professionals and over half of the attorneys were 45 years old or younger. All attorneys had law degrees, and over half of the of child welfare professionals had master’s degrees. Child welfare professionals and attorneys came from four US census regions (Midwest, Northeast, Southeast, and West) with most child welfare professionals located in the Southeast and nearly half of the attorneys located in the West. The two groups of professionals worked in a range of settings, with most child welfare professionals and attorneys working in urban settings. Over half of the child welfare professionals and attorneys had 10 years or less of professional experience. The majority of child welfare professionals worked for state or county agencies, while most attorneys worked in private practice.

Table 2.

Professionals′ demographic characteristics (N = 30).

Characteristics	Attorneys (N = 15)	Child Welfare Professionals (N = 15)	Total (N = 30)
	N (%)	N (%)	N (%)
Age (years)
26–35	4 (27)	5 (33)	9 (30)
36–45	4 (27)	6 (40)	10 (33)
46–50	2 (13)	2 (13)	4 (13)
51 or older	5 (33)	2 (13)	7 (23)
Gender
Female	14 (93)	13 (87)	27 (90)
Male	1 (7)	2 (13)	3 (10)
Race/ethnicity
Black/African American	0	1 (7)	1 (3)
White/Caucasian	13 (87)	12 (80)	25 (83)
Hispanic/Latinx	1 (7)	2 (13)	3 (10)
Multiracial	1 (7)	0	1 (3)
Highest level of educationa
Bachelor’s degree	0	6 (40)	6 (21)
Master’s degree	0	9 (60)	9 (31)
Professional degree	14 (93)	0	14 (48)
Census region
Midwest	0	3 (20)	3 (10)
Northeast	4 (27)	4 (27)	8 (27)
Southeast	4 (27)	6 (40)	10 (33)
West	7 (47)	2 (13)	9 (30)
Work settingb
Urban	8 (53)	10 (67)	18 (60)
Rural	5 (33)	8 (53)	13 (43)
Suburbs	3 (20)	2 (13)	5 (17)
Other	1 (7)	0	1 (3)
Professional experience (years)a
1–5	5 (36)	5 (33)	10 (34)
6–10	3 (21)	4 (27)	7 (24)
11–15	2 (14)	3 (20)	5 (17)
16–20	2 (14)	3 (20)	5 (17)
21+	2 (14)	0	2 (7)
Practice typea
State/county	2 (14)	11 (73)	13 (45)
Private Practice	8 (57)	3 (20)	11 (38)
Other	4 (29)	1 (7)	5 (17)

^aMissing data due to nonresponse.

^bCategories are not mutually exclusive.

Perceptions

Participants’ perceptions of the child welfare system’s capacity to support parents with disabilities and their families comprised four broad themes (Table 3). They are as follows: (1) lack of expertise on disability; (2) paucity of appropriate services for disabled parents; (3) negative attitudes about parents with disabilities; (4) positive encounters; and (5) challenging relationships. These findings are described below using case examples and participant quotes.

Table 3.

Themes, codes, and definitions.

Theme	Definition	Code	Definition
Perceptions	Perceptions of how the child welfare system works with parents with disabilities and their families	Lack of expertise on disability	The child welfare system lacks expertise on disability and parenting with disability.
		Paucity of appropriate services for disabled parents	The child welfare system lacks services appropriate for parents with disabilities.
		Negative attitudes about parents with disabilities	The child welfare system has negative attitudes or biases toward parents with disabilities.
		Positive encounters	Parents’ and professionals’ positive encounters with and perceptions of each other
		Challenging relationships	Parents’ and professionals’ challenging relationship with each other
Recommendations	Recommendations for improving how the child welfare system works with parents with disabilities and their families.	Recommendations from parents	Parents’ recommendations on how the child welfare system could be improved to work with them and their families.
		Recommendations from professionals	Child welfare professionals’ and attorneys’ recommendations on how the child welfare system could be improved to work with parents with disabilities and their families.

Lack of expertise on disability

Nearly all parents felt that the child welfare system was unprepared to support parents with disabilities and their families, due to a lack of knowledge or expertise about disability. One parent, for example, described feeling held to an unreasonable standard: “it doesn’t seem like they work with people with disabilities well … they still expect us to be perfect.” Another parent described feeling that the child welfare professional who visited his home had limited understanding of disabled parents: “I just think she might not have had enough experience dealing with people with disabilities.” Some parents felt the limited understanding of disability resulted in professionals not recognizing that disabilities are wide-ranging, and that some are invisible. One parent, for example, felt that child welfare professionals dismissed her disability because it was not immediately visible: “if someone has an invisible disability, it’s denied altogether that they have any disability.” Other parents felt that professionals’ lack of awareness about disability led to their needs being overlooked or misunderstood. One parent reported frustration that the child welfare professional she worked with was more focused on her disability than her grief about the recent death of one of her children: “It was all about [my] mental illness … This involvement happened about four or five months after my daughter died … Hello? You don’t think that affects our family at all? That’s the major thing going on here.”

Another parent discussed how, when she was trying to leave an abusive spouse, the child welfare professional she worked with did not understand that disability and intimate partner violence intersected in a way that made leaving more complicated: “They did not get what happens to women in domestic violence situations with disabilities … they were of the mind-set that I should have just walked away.” She went on to explain that she had complex medical needs, and the child welfare professional did not understand that most shelters were unable to accommodate her. She said that going to a shelter could be “fatal” if she did not have her needs met, which she wished child welfare professionals understood.

Most child welfare professionals and attorneys agreed that the child welfare system lacked expertise in working with parents with disabilities. One attorney explained that this lack of understanding by the child welfare system can lead to parents being given information that is inappropriate for them:

You’re saying that someone has an intellectual disability such that you don’t think they’re able to safely parent their kid but then you just hand them a packet with an eight-page form with a whole bunch of fine print on it and expect them to fill it out and then say they’re not cooperative or noncompliant when they don’t do it.

Similarly, another attorney described working with a parent with dyslexia who had been assessed using a written multiple-choice evaluation, and whose “actual parenting was fine. But she was not going to ever be able to be good on a psychological evaluation.” The attorney went on to opine that had that parent been properly assessed by a professional trained at evaluating disabled parents, the experience for the family would have been much better. Other times it was expecting parents with disabilities to be similar to parents without disabilities. As one child welfare professional said, “quite frankly a lot of providers just don’t understand it so they become frustrated” when teaching skills to parents with intellectual disabilities.

Both child welfare professionals and attorneys also noted a lack of training about disability and their lack of expertise on disabled parents’ legal rights as a hindrance to their work. Specifically, most child welfare professionals and attorneys were unfamiliar with the 2015 guidance for child welfare agencies and courts on complying with federal disability rights laws issued by the U.S. Departments of Justice and Health and Human Services. Many had the same understanding of the guidance as the child welfare professional who said, “I know that it’s out, but I’m not like familiar with it.”

Paucity of appropriate services for disabled parents

Several parents felt that the child welfare system lacked appropriate supports and services for disabled parents and their families. Many described being disappointed to not receive the support they had hoped for as part of their child welfare system involvement. One parent had anticipated being connected with child care support, but said that child welfare “didn’t even offer any suggestions.” Another parent described how she was denied support after proactively contacting the child welfare system for assistance: she was told “we’re child protective services and not child preventive services.” One parent, despite having a service plan for reunification with her children, said that child welfare “had put no services into place, not for me, not for the kids – nothing.”

In parents’ experience, even when services were available, they were not always appropriate. One parent described being assessed by the child welfare system for substance use, when she needed help with postpartum depression:

I knew it was postpartum, I had seen the doctor before. I just couldn’t afford to go to him anymore. And I was off medication. But they didn’t suggest anything, they didn’t talk to me about meds … They weren’t trying to help me at all.

In her experience, the child welfare system was more focused on determining whether parents were using substances than assisting them with their mental health needs. Another parent did not feel adequately supported in fulfilling her service plan: “I did ask specifically for a list of exactly what they wanted me to do. Because I work very well with lists. I never got a list.”

Other parents struggled with the inconsistency of services across child welfare systems in different localities. A parent with a history of substance use had previously used wraparound services, which support the mental health needs of the parent and family. She explained that these services are “designed to give a parent that is struggling … that breather to regroup. That way, they don’t relapse.” She went on to describe her frustration that these services were no longer available after she had moved to a different state.

Similarly, child welfare professionals and attorneys described a lack of appropriate services for disabled parents. One attorney explained that sign language interpretation was so unavailable in her area that one Deaf parent “went out and he bought his own equipment to do voice to text recognition” in response to the systemic lack of services to accommodate his needs.

Some attorneys and child welfare professionals attributed the dearth of services to systemic resource limitations. One attorney said, “since we are in a rural area resources are always a challenge,” while another described the child welfare system as “overworked and understaffed.” One child welfare professional similarly described it as “a caseload issue.” Child welfare professionals and attorneys also cited a shortage of capable service providers. One child welfare professional, for example, was frustrated by “the lack of competent service providers,” saying that “it’s pretty disappointing the services that are not available that should be.” Another child welfare professional described a similar challenge: “A huge struggle for us here is like finding quality mental health providers.” Even when providers are appropriately qualified, an attorney noted that “You definitely have to have compassionate people because if you don’t have compassionate people trying to do this work then you’re never going to get anywhere.”

Other systemic challenges also contributed to the paucity of services appropriate for parents with disabilities. As one child welfare professional noted, the lack of adequate services in his area was the result of a systemic assumption that people with disabilities are not parents: “all their services are just catered toward like the basic like activities of daily living … it’s implied that like people with intellectual disabilities don’t have children.”

In addition, many child welfare professionals and attorneys explained that all parents, regardless of disability status, receive the same services, which often results in disabled parents receiving services that are not useful to them. According to one attorney, the system “is set up for kind of an average parent … But when you get into a client with a lot of disabilities, I think they don’t quite have the panoply of services for that kind of person.” Another attorney said, “there’s very little in the way of tailoring or making accommodations of those services and how those services are offered … They just kind of do a one-size-fits-all.” Another attorney agreed, saying that parents with intellectual disabilities were generally “given the same parenting classes that everybody else would get, give them the same mental health treatment.” Others felt that the lack of appropriate services was due to limited agency resources, including funding. One child welfare professional said her agency had a “throwaway attitude,” where disabled parents were referred to services without considering whether the parents would be able to benefit from them. Another child welfare professional explained, “they’re not recognizing that you can’t just cookie cutter services.”

This dearth of appropriate services, combined with the child welfare system’s lack of expertise on disability, sometimes made situations feel insurmountable. One attorney noted, “The bar for many of my clients who are disabled is like a constantly moving target.” This attorney described an autistic parent she represented who fulfilled all of the child welfare agency’s requirements, but

Becomes frustrated so she yells easily or what they perceive to be easily … Then, they add on anger management. Again, it’s not anger management geared towards somebody with an intellectual or a cognitive disability, so for my client it’s just another box. It’s actually just making her frustration and her anger much worse.

Parents described experiencing similar situations. For example, one parent said,

I had to do drug testing, I was told initially – like random drug testing for six months. I did it randomly for six months … there was no positive. And then they said for a year. So, then I did it for a year, and then they said that they were concerned about my communication being erratic with the social workers and they wanted me to continue to do that. Well, that was a real hardship because I didn’t have a vehicle at the time … and it takes me two hours to get the lab work done.

Negative attitudes about parents with disabilities

Several parents encountered negative attitudes, including bias, concerning their parenting abilities. One parent said, “if you have a disability, you’re already a bad parent. So, then they go about proving that instead of being helpful.” Some parents felt that they were not treated like adults because they were disabled. One parent, who is a wheelchair user, explained, “I felt like the lady was going to kneel down when she talked to me. It is as if she was talking to a child.” Similarly, one parent said, “yeah, they just treat us like children,” and another reported that “they treated me like the quintessential problem child.” Other parents felt that they were not evaluated fairly because they were both disabled and low-income. One parent, who was low-income and received Medicaid, felt that a parent like her was more likely to be involved with the child welfare system “than somebody who’s white, in a professional job, [and] living in a nice house, even if they’re disabled.”

Some parents described long-term effects of the negative attitudes they encountered. For example, one parent stated, “now I probably have a mental illness because of the PTSD that they caused.” Another parent said that she now keeps “the house too clean because I’m afraid of [child welfare].” Parents also felt these experiences negatively impacted their children because “it’s very traumatic to be removed from your parent.”

Many child welfare professionals and attorneys agreed that the child welfare system was biased against parents with disabilities. One attorney said that the child welfare system “is less likely to be fair with them,” and both attorneys and child welfare professionals felt that parents with disabilities were pre-judged as unable to care for their children. One child welfare professional remarked, “I do think that the system thinks that people with disability don’t have the capacity or have the ability to do things.” An attorney agreed that removing children from disabled parents was often a foregone conclusion: “I think the system is sort of set up to say, if someone has a disability … maybe they’re not fit to parent anyway.” Another attorney described this attitude as leading to inadequate service provision, noting that the system in her area tended to say, “am I going to go and spend all my resources helping this person with schizophrenia when I know that long-term they can’t have their child anyway?”

Positive encounters

Parents, child welfare professionals, and attorneys described viewing each other positively when parents found child welfare professionals and attorneys to be helpful and respectful, and when attorneys and child welfare professionals appreciated parents’ resilience and resourcefulness.

Several parents recounted positive experiences with attorneys and child welfare professionals. One parent, for example, said that her attorney was “very instrumental” because “She is the one that made sure they added in my daughter’s death. Because I kept telling them, ‘This is more about my daughter dying and what’s going on with our family.’” This same parent also had a social worker who was “just so awesome. I never, ever dealt with somebody like that before who actually helped us.” Another parent also had a good experience with her family’s social worker: “that caseworker [and I] worked really closely together, we were constantly on the phone together … I think they offered some of the best services as far as like that kind of situation goes.” This parent had been involved with child welfare on multiple occasions, and said that particular social worker had “set that case apart from any other services that I’ve received.”

Similarly, some child welfare professionals and attorneys were impressed with parents’ resilience and ability to self-advocate when confronted with systemic challenges. One attorney described a parent whose disability was a strength: as a result of the mother’s adaptive skills gained because of her disability, she had “the ability to keep [a] planner with her. And then she knows she always has it, because she knows everything that’s in her bag.” This allowed her to keep track of her appointments and medications, including staying on top of court dates, “Because our judge changes those all the time.”

Challenging relationships

Parents, child welfare professionals, and attorneys also described having a more challenging relationship with each other, as parents could find it difficult to trust child welfare professionals and professionals described the added effort needed to work with parents with disabilities in a system that was not set up to adequately support them.

Many parents found it difficult to trust the child welfare professionals who had the power to remove their children. One parent contrasted a positive experience with a social worker with negative experiences in which the child welfare professionals supporting her also had the power to remove her children, saying, “You can’t walk both sides of the fence.” Another parent who had been a social worker herself found the system’s power in her life arbitrary and frightening:

When they were interviewing us, I got scared several times–I mean downright scared–and I’m not easy to scare–that they would misinterpret what I said … They just seemed to look around and say, ‘The house is not clean enough because there’s a mark on the wall.’ … that’s not the type of therapist I was, I think they should be taught not to do that.

A child welfare professional acknowledged the challenge of trying to support parents who had reason not to trust them: “in their mind we’re there to take their child because they have a disability. We have to let them know that we’re not there to do that but we’re actually there to help them.”

From most child welfare professionals’ and attorneys’ points of view, however, the main challenge of working with parents with disabilities was the extra effort required. This was not inherently a problem for professionals who saw it as an intrinsic part of working with parents with disabilities, such as the attorney who used added care in communicating with her clients who had intellectual disabilities: “I know I need to really be careful about the language that I use and really break down the information.” This extra effort became a more problematic, however, when combined with high caseloads, the lack of appropriate services for parents with disabilities, and other systemic issues. One child welfare professional explained,

Recently I had a case with two Deaf parents, and … there was a lot of buck-passing in terms of interpreter services … Like, ‘Oh, the agency has to pay for the interpreter,’ or ‘They have to set it up,’ like the department or the county. Like, ‘We’re not paying for that. That’s why we contract with agencies.’ It was ridiculous … in court like at least once we had to just adjourn it because we didn’t have a [sign language] interpreter.

Recommendations

Parents, child welfare professionals, and attorneys also shared their recommendations for improving the child welfare system’s capacity to support parents with disabilities and their families (Table 4). These findings are described below using case examples and participant quotes.

Table 4.

Recommendations from parents, attorneys, and child welfare professionals.

Parent recommendations	Attorney and child welfare professional recommendations
Improve understanding of disability and parenting with disability Enhance services for disabled parents Expand advocacy for disabled parents Increase transparency	Increase training on and knowledge about working with parents with disabilities Improve services for disabled parents Increase resources so the child welfare system can support parents more effectively Address negative attitudes toward parents with disabilities

Recommendations from parents

Parents offered four broad recommendations for the child welfare system: (1) improve understanding of disability and parenting with disability; (2) enhance services for disabled parents; (3) expand advocacy for disabled parents; and (4) increase transparency.

Improve understanding of disability and parenting with disability.

Some parents recommended that those working within the child welfare system should “understand the different disabilities” so that professionals would not make “a snap judgment” about their fitness to parent. Parents felt that an improved understanding of disability would make it less likely that they would have child welfare system involvement, or that their children would be removed once they were involved. One parent put it bluntly: “They need to change a lot of things, like not to use people’s disabilities against them in court.” More specifically, parents suggested that greater expertise in disability could help with “awareness that disabled parents are different … They have different needs. They have different stressors … They have different interpretations that others may not be aware of.” A parent who had child welfare system involvement as a result of intimate partner violence suggested that her local child welfare agency needed to understand how intimate partner violence and disability could intersect: they should know “how to handle domestic violence properly and understand populations and how they are going to be affected differently.” Another parent recommended that improved understanding of disability could be achieved if agencies hired staff with disabilities:

They need some disabled social workers … Everything would not be so strict or so much of a big deal if the social worker has to go through it too … I do not want to feel like I am explaining something that a disabled person would understand.

A parent also suggested that if her social workers had been trained on and understood the Americans with Disabilities Act (ADA), they would have been more “understanding that my disability didn’t have an adverse impact on my kids.”

Enhance services for disabled parents.

Parents recommended improved services for parents with disabilities in the child welfare system. For some parents, this could mean more continuously available services, such as for the parent who had received services that she found helpful and was abruptly told that she could no longer receive them: “even though I wasn’t ready to be done, they’re just like okay, you’re done.” Other parents recommended that services be individually tailored: “Everybody has a unique background and has a unique situation … there need to be interventions that … have a direct nexus with the problem that they’re trying to address.” Some parents suggested that this could be accomplished through referrals to community-based supports, without involving parents in a child welfare system investigation: “It needs to be a lot less adversarial.” Another parent noted that child welfare professionals who were culturally competent with her immigration experience would have been helpful.

Expand advocacy.

Some parents recommended that parents with disabilities have better advocacy supports as they navigate their family’s involvement with the child welfare system. One parent, for example, who went to court by herself, said that she could have benefitted from “somebody standing there to kind of help be my backbone.” Another parent, who had an advocate from a mental health organization accompany her to court, suggested that parents with other disabilities would benefit from the same type of support: “get somebody from one of these organizations to either support the family during these meetings, and during court.” Parents also suggested that more robust advocacy on their behalf could provide needed balance, “because really what it was, was that child protective services and foster care have far too much power.” Advocates could then act as “kind of almost like a failsafe,” by preventing a child welfare agency “from instituting a service plan when there’s no rhyme or reason to do that,” including confirming whether a parent needed to be involved with child welfare at all.

Increase transparency.

Parents recommended that child welfare agencies could better work with disabled parents if they were more transparent, so that parents could better understand the process in which they were involved. Some suggested clarity on the unspoken expectations they were supposed to meet, such as the parent who felt that both her service plan and the issues it was trying to address were “very vague,” and that when she tried to complete her service plan in a timely fashion, she was told that she “was just trying to check things off on a checklist” rather than “recognizing the core problems.” Another parent wanted to understand how and why he had been reported to the child welfare system, so that he could be assured the report was legitimate: “What is to stop my neighbor from making 17 reports on me because they dislike me?” This parent suggested that more transparency around the origins of his child welfare system involvement would have helped the process go more smoothly.

Other parents recommended more transparent communication to make the experience of child welfare system involvement less nerve-wracking. One parent described the stress of having child welfare system involvement: “they could’ve at least prepared me, you know … they should’ve not made me have to sit there and worry.” Another parent requested guidelines for her service plan for this reason, “And they just summarily refused. And here I am walking in with panic attacks.”

Recommendations from professionals

Child welfare professionals and attorneys recommended four areas of improvement: (1) increase training on and knowledge about working with parents with disabilities; (2) improve services for disabled parents; (3) increase resources so the child welfare system can support parents more effectively; (4) address negative attitudes toward parents with disabilities.

Increase training on and knowledge about working with parents with disabilities.

Most child welfare professionals and attorneys recommended increased training on working with disabled parents. As one child welfare professional said, “Training. Training. Training. I’ve been doing this work for 18 years and I don’t remember ever anybody offering a training specifically on working with parents with disabilities.” Many professionals suggested training to help ensure that they were effectively supporting parents with disabilities. One child welfare professional explained needed training on working with parents with intellectual disabilities, while another wanted better understanding of “the most appropriate and the most welcoming” way to work with disabled parents, “so we’re not offending them.” An attorney suggested training on identifying a parent’s disability, to facilitate “knowing really what I should be doing as an advocate for them.” Another attorney cited a need for training on “how to handle specific mental health disorders.”

Both child welfare professionals and attorneys also expressed a need for more information about supports for parents with disabilities. Often, they recommended creating a resource directory; as one attorney said: “actually having a list of resources at my fingertips when a case first comes into what I might be able to refer my client to.” Having a resource list could help attorneys advocate for parents more effectively:

The state is required to make reasonable efforts to prevent or eliminate the need for removal … then you have reasonable efforts to reunify after dependency has been found, so I think part of that analysis hinges on what services are in fact available.

Similarly, a child welfare professional recommended “connecting the dots” between training on working with parents with disabilities, and the local services available for those parents. Another child welfare professional explained, “I think just trying to understand maybe a little bit more around just where the developmental diagnosis would prompt for or meet certain criteria for supports or additional services … so that I can refer clients to appropriate places.” Several attorneys suggested that expertise about supports for disabled parents could even be outsourced, as long as it was readily accessible. One attorney said that this outside assistance could be akin to “the Immigration Defense Practice, which offers technical support to attorneys all over the country … who are working complicated immigration cases.”

Additionally, both child welfare professionals and attorneys recommended that they and their colleagues become more knowledgeable about disabled parents’ rights. Child welfare professionals expressed a need for “a better understanding, I think, of their basic parental rights or their basic rights as disabled parents.” One attorney agreed, saying that the local child welfare agency “should also be educated on this so that I don’t get an e-mail asking me what an ADA is … that is just unacceptable.” Another attorney recommended that professionals knowledgeable about the ADA be assigned to cases involving parents with disabilities.

Improve services for disabled parents.

Attorneys and child welfare professionals also recommended improved services for parents with disabilities. This could include “services that are tailored more to people with physical disabilities, or mental health issues, [or] learning disabilities, specifically in terms of raising children,” “hands-on parenting – that could tailor-make their services toward the parent’s learning style,” or “a higher level of therapy than they [currently] get,” as opposed to the one-size-fits-all style of service provision that many attorneys and child welfare professionals saw as the status quo. Attorneys also recommended “home health aides” to support families in caring for their children, or “a supported living arrangement so the parents can be with the children.” Another attorney recommended “a case worker that was not beholden to the department but just the services for them,” to eliminate the need to balance supporting parents with looking for evidence that could potentially facilitate terminating their rights.

As part of improving services, some professionals recommended relocating where services were offered to make them easier for parents to access. A child welfare professional recommended having “a lot of things in one location,” because in her area, “you might have to go two buses to get to community services for the developmentally disabled from downtown where family court is.” Similarly, another child welfare professional noted that in areas with waiting lists for services, making them more geographically centralized could make it easier for parents to access them as soon as they became available.

Increased resources for the child welfare system.

Both child welfare professionals and attorneys suggested that putting more resources into the child welfare system would allow it to better support parents with disabilities. Attorneys and child welfare professionals alike noted the need for more service providers as well as “providers that are more appropriate.” Several child welfare professionals recommended reducing caseloads by increasing financial resources available to the system. A child welfare professional felt the system needed the “money to be able to dedicate more time to [cases] because when you have a large case load you can’t dedicate that much time to each case.” An attorney remarked, “this is a horrible thing to say – we don’t get paid enough to really dig into them.” Reducing caseloads and paying child welfare professionals more highly could also, in one attorney’s estimation, “possibly reduce the turnover so that … you’ve got a [child welfare] worker who’s been doing it for ten years instead of ten months.”

Address negative attitudes toward parents with disabilities.

To address systemic negative attitudes toward parents with disabilities as well as their own individual biases, several attorneys recommended the development of best practices for working with disabled parents. They suggested exploring “what are some general accommodations that we should look at doing? What are some assumptions we should be careful about not making? Like that kind of stuff that just sort of calling out potential bias,” because (as another attorney said) “There’s a lot I could be doing better.” One attorney also critiqued what she saw as an over-reliance on psychological evaluations in her agency, and said,

we should all have to take a psychological evaluation before we’re allowed to ever act like we know what one is. Kind of like police officers have to be tased in some jurisdictions before they’re allowed to use a taser.

Discussion

This study provides important evidence about the perspectives of parents with disabilities, child welfare professionals, and attorneys who represent parents about both the child welfare system’s capacity to work with disabled parents and their families, and the respondents’ recommendations for improvement. Overall, respondents felt that the child welfare system does not adequately support parents with disabilities and their families. There was broad agreement among parents, child welfare professionals, and attorneys that those who work within the child welfare system need greater knowledge about parents with disabilities and that robust services for parents with disabilities are urgently needed. Further, parents, child welfare professionals, and attorneys reported both positive and negative encounters with one another.

Limitations

Although this study provides important insight into the perspectives and recommendations of parents with disabilities, child welfare professionals, and attorneys about the child welfare system’s capacity to support disabled parents and their families, there are limitations. First, because the majority of participants were White, well-educated, and heterosexual, the sample lacks diversity and may not reflect the experiences of all parents, child welfare professionals, and attorneys. This study also did not include parents from all regions of the United States. Future research should aim to explore the experiences of a more diverse sample. Second, because the study was voluntary, individuals who chose to participate may have had experiences that are not representative of others who did not volunteer. Further, while the information collected is confidential, some child welfare professionals and attorneys may have been reluctant to participate because they were concerned about professional ramifications if their employers learned about their involvement. Likewise, parents who had particularly negative experiences may not have wanted to share their difficult stories. Third, because recruitment was primarily completed through national and local organizations and social media, some individuals who are not well-connected, particularly parents, may have been excluded. Fourth, the study was based on self-reporting and participants’ responses were not verified, which may have led to social desirability bias. Fifth, besides screening for eligibility (i.e., respondent had relevant experience within past 5 years), this study did not capture the specific number of years since the parents were involved with the child welfare system or the professionals had worked with disabled parents. Certainly, recall bias may exist, especially for respondents whose experiences were not recent. Nonetheless, 5 years was chosen because of the known challenges related to recruiting disabled people (Banas, Magasi, The, & Victorson, 2019). Moreover, a study of nondisabled parents involved with the child welfare system used similar criteria (i.e., involvement within 4 years; Buckley, Carr, & Whelan, 2011). Finally, because our sample included 15 parents with diverse – and at times, co-existing – disabilities, there was only a small number of parents with any given disability. As such, the study’s findings do not account for differences in experiences that may be disability-specific.

Implications for policy, practice, and research

Notwithstanding our study’s limitations, the findings have important implications for policy, practice, and research concerning parents with disabilities and their families when involved with the child welfare system. While some respondents reported positive experiences related to the child welfare system’s ability to support disabled parents and their families, most felt greater attention was needed to respond to these families’ needs.

Parents, child welfare professionals, and attorneys agreed that bias toward parents with disabilities was an issue within the child welfare system, and often resulted in adverse experiences for families. Past research has found that child welfare professionals’ decisions are often based on presumptions that parents with disabilities will endanger their children (Azar & Read, 2009; Callow, Buckland, & Jones, 2011; Gur & Stein, 2019; Lightfoot, Hill, & LaLiberte, 2010; Lightfoot & LaLiberte, 2011; Malacrida, 2009; Powell, 2017; Swain & Cameron, 2003). Biases can also affect the types of supports, if any, that families receive, as well as case outcomes (Callow et al., 2011; Lightfoot et al., 2010; McConnell, Llewellyn & Ferronato, 2006; Powell, 2017).

Respondents suggested that greater expertise about parents with disabilities among professionals who work with disabled parents and their families could help to alleviate outdated beliefs about the competence of parents with disabilities. The need for increased training is consistent with existing research, which has found that those who work in the child welfare system often lack knowledge about strategies for working with parents with disabilities and their families (e.g., Azar et al., 2013; Gur & Stein, 2019; LaLiberte & Lightfoot, 2013; Tarleton, 2015). Notably, in this study, few child welfare professionals or attorneys had received formal training about parents with disabilities or the child welfare system’s legal obligations to accommodate them.

Information and training for child welfare professionals and attorneys should cover an array of topics, including adaptive parenting strategies and equipment, appropriate parenting assessments, and legal mandates for child welfare professionals. Ideally, parents with disabilities would be involved and able to share their insights throughout the training. Training should be ongoing, so child welfare professionals and attorneys have regular opportunities for professional development related to supporting disabled parents.

Similarly, agencies should ensure that their employees have access to up-to-date information. For example, few child welfare professionals or attorneys knew that the U.S. Departments of Justice (DOJ) and Health and Human Services (HHS) issued guidance in 2015 for child welfare agencies and courts on complying with federal disability rights laws. This guidance, which explained child welfare agencies’ and courts’ legal obligations per the ADA, could address some of the child welfare professionals’ and attorneys’ gaps in knowledge, and facilitate their capacity to better support parents with disabilities and their families. Hence, the lack of awareness about the DOJ/HHS guidance warrants further attention. In particular, efforts should be made to ensure the guidance is disseminated broadly to professionals. Additionally, research should explore why this guidance is not being followed and how it could change to be more effective for those it is intended to serve.

In addition, our results reinforce previous researchers’ findings (e.g., Lightfoot et al., 2018; Llewellyn & Hindmarsh, 2015; Prilleltensky, 2003) that greater access to supports and services is urgently needed. Parents recommended that supports be available when needed, while child welfare professionals and attorneys focused on relocating services to make it easier for parents to access them. The divergence in opinions may show the influence of presumptions about disabled parents: child welfare professionals and attorneys may assume parents need assistance, even when they do not. Nonetheless, all participants agreed that services and supports must be tailored to meet the individual needs of parents, and this includes ensuring that they are accessible. For example, if a parent with an intellectual disability is required to attend parent education classes, it is essential that this training be conducted by a professional with expertise on working with parents with intellectual disabilities. Although attention has been given to the importance of parenting supports and adaptive equipment for disabled parents, they remain limited (Lightfoot et al., 2018; Llewellyn & Hindmarsh, 2015; Prilleltensky, 2003). Certainly, the dearth of appropriate supports and services makes reunification even more difficult (Lightfoot et al., 2018; Powell & Nicholson, 2019). Thus, resources must be devoted to the development and implementation of supports and services that are responsive to the needs of parents with disabilities and their families.

Parents, child welfare professionals, and attorneys all strongly agreed that systemic change is urgently needed. In particular, agencies should develop and implement policies and procedures for cases involving parents with disabilities. Established policies and procedures will not only improve the ability of professionals to support disabled parents and their families, they will also increase transparency, which parents felt was missing. These policies and procedures will also help to ensure that employees are complying with their legal obligations under federal disability rights laws. Likewise, agencies must dedicate attention and resources to developing and retaining a workforce that can respond to these families and their needs effectively and without bias. Although there is expected variation across geographical locations and settings, the consensus in perspectives and recommendations from respondents from different parts of the US suggests that regionally decentralized systems face common challenges.

Notably, this study’s findings corroborate prior studies on the experiences of nondisabled parents within the child welfare system. Similar to this study, which found that disabled parents had positive experiences with the child welfare system when they felt helped and respected, existing research has reported positive experiences when nondisabled parents felt respected and able to collaborate with child welfare professionals (e.g., Altman, 2008; Chapman, Gibbons, Barth, & McCrae, 2003; Dale, 2004; Darlington, Healy, Yellowlees, & Bosly, 2012). Also similar to this study, nondisabled parents have reported encountering negative attitudes and stigma (Dale, 2004; Dumbrill, 2006; Smithson & Gibson, 2016), a lack of expertise by child welfare professionals about domestic violence or mental illness (Buckley et al., 2011; Estefan, Coulter, Vandeweerd, Armstrong, & Gorski, 2012), a lack of transparency (Buckley et al., 2011; Clarke, 2011), and inadequate or insufficient services (Dale, 2004; Smithson & Gibson, 2016; Tilbury & Ramsay, 2018). Like this study, past research has also found that nondisabled parents have trouble trusting child welfare professionals (Tregeagle & Mason, 2008) and are affected by systemic challenges (e.g., resource limitations, understaffing, and frequent turnover) (Altman, 2008; Dale, 2004; Smithson & Gibson, 2016).

However, even when parents with and without disabilities face similar challenges, parents with disabilities experience them in unique ways. For example, low-income nondisabled parents feel judged and stigmatized by child welfare professionals because of their economic status (Dale, 2004; Harris, 2012; Hughes, Chau, & Vokrri, 2016), while parents with disabilities felt presumed to be unable to parent because of their disabilities. Likewise, while the literature suggests that all parents could benefit from improved and increased services, parents with disabilities may need services that are individually tailored to their needs.

In addition to important insights for policy and practice, this study also has important implications for future research. For example, the sample, particularly parents, lacked diversity and did not account for how other identities (e.g., race, ethnicity, gender identity, sexual orientation, class) affected the experiences these parents had with the child welfare system. Thus, future investigation should take an intersectional approach (Ortega & Faller, 2011) to understand how people with disabilities who are also members of other historically marginalized communities experience the child welfare system. Other areas of possible inquiry include ways the child welfare system can collaborate with the disability community to build disability cultural competence (Dupré, 2012), as well as institutional barriers to compliance with federal disability rights laws, and effective parenting services and supports, as perceived by disabled parents.

Conclusion

To improve the child welfare system’s capacity to support parents with disabilities and their families, greater attention must be given to the perspectives of diverse stakeholders in the child welfare system. This study offers new evidence concerning the perspectives of parents with disabilities, child welfare professionals, and attorneys who represent parents about the system’s ability to work with disabled parents and their families, as well as recommendations for improvement. With increased knowledge and training for child welfare professionals and attorneys on parents with disabilities, and individually-tailored services for disabled parents, the child welfare system will be better equipped to support these families.

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

Biographies

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, 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.

Appendix A. Interview guides for parents, child welfare professionals, and attorneys

Child Welfare Professionals

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 what it is like to work with these parents.

   1. What are the challenges?
   2. Do you ever have to make any special accommodations for these parents? If so, please describe.
   3. What, if any, types of services are provided to these parents? Are they the same or different than those provided to nondisabled parents?
4. I would now like to learn about any training you have had related to working with people with disabilities.

   1. Did you learn about working with people with disabilities during your post-secondary training? If so, please explain. Was that sufficient? What topics were you taught?
   2. 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?
   3. Is there anything more you wish you could be trained on related to working with parents with disabilities?
5. I would now like to learn about any policies your agency has concerning parents with disabilities.

   1. Does your agency have any policies related to working with parents with disabilities? If so, please describe?
   2. How did you learn of these policies?
   3. Are these policies enforced? If so, how? If not, why?
   4. What do you think about these policies?
6. Let’s now discuss the Americans with Disabilities Act (ADA).

   1. What is your understanding of the ADA?
   2. How did you learn this?
   3. Does your agency/supervisors ever talk about the ADA? If so, what is discussed?
   4. What is your understanding of how, if at all, the ADA applies to your work?
   5. What is your understanding of reasonable accommodations? How did you learn this?
   6. How does the ADA impact your work?
7. What is your involvement with termination of parental rights (TPR)?

   1. Have you ever been involved in a TPR case involving a parent with a disability? What was it like?
   2. Do you recall if the ADA was ever discussed in the case? If so, please describe.
8. 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. Has your agency discussed it?
   5. Did it prompt any changes at your agency? If so, please describe.
9. Do you think there are differences in the way the child welfare system works with parents who have disabilities versus those who do not? Please describe.

   1. If yes, why do you think that is?

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

11. What resources, supports, or training do you wish you had that could make your job easier when working with parents with disabilities and their families?

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

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?