Barriers and Solutions to Passing State Legislation to Protect the Rights of Parents With Disabilities: Lessons From Interviews With Advocates,Attorneys,and Legislators

Abstract

Parents with disabilities experience discrimination within the child welfare, family law, and adoption and foster care systems. In response, there have been increasing calls for states to pass legislation prohibiting discrimination against parents with disabilities, and as of 2020, 28 states have passed or are considering such legislation. This qualitative study explored the perspectives of 19 advocates, attorneys, and legislators on barriers and solutions for passing legislation to protect the rights of parents with disabilities. Participants identified three barriers: (a) legislators’ pejorative attitudes toward parents with disabilities, (b) external opposition, and (c) legislative barriers. Participants also identified eight solutions: (a) cross-disability advocacy, (b) education, (c) relationship-building, (d) bipartisanship, (e) support from state and national organizations, (f) strong sponsors, (g) incrementalism, and (h) model legislation. Study findings should help to inform ongoing legislative advocacy to protect the rights of parents with disabilities.

Keywords

parents with disabilities advocacy legislation

The disability rights movement has experienced many successes. In particular, advocacy by people with disabilities and their families has led to landmark legislation, such as the Rehabilitation Act, the Individuals with Disabilities Education Act (IDEA), and the Americans with Disabilities Act (ADA). Consequently, people with disabilities enjoy increased opportunities to learn, live, and work in their communities. At the same time, however, people with disabilities are still often denied the right to create and maintain families. In response, parenting has been called the “last frontier” for the disability rights movement (Kirshbaum & Olkin, 2002).

Long-standing research indicates that people with disabilities experience pervasive discrimination within child welfare, family law, and adoption and foster care systems (Callow et al., 2011). Studies have shown that parents with disabilities, especially parents with intellectual or psychiatric disabilities, have higher rates of child welfare system involvement and termination of parental rights than parents without disabilities (e.g., DeZelar & Lightfoot, 2018; Kaplan et al., 2019; LaLiberte et al., 2017; Lightfoot & DeZelar, 2016). Parents with disabilities involved with the child welfare system are also often denied accessible services, further limiting their opportunities to be reunified with their children (Albert & Powell, 2020; Powell, 2017). Indeed, national child welfare data indicate that at least 19% of foster care children have a parent with a disability (DeZelar & Lightfoot, 2018; Lightfoot & DeZelar, 2016). The same study found that parents with disabilities had 22% higher odds of having their parental rights terminated than parents without disabilities (Lightfoot & DeZelar, 2016). Similarly, within family law, parents with disabilities are often denied child custody or visitation, especially if the other parent does not have a disability (Breeden et al., 2008; Economou, 2016; Lanci, 2018; Powell, 2019). Furthermore, adoption and foster care agencies often discriminate against prospective parents with disabilities (Andrews & Ayers, 2016; Mutcherson, 2009).

In response, there have been increasing calls for states to pass legislation to prohibit discrimination against parents with disabilities. The National Council on Disability’s (2012) report, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their Children, recommended federal or state legislation aimed at both protecting the rights of parents with disabilities and supporting their families, including model legislation to address the issues facing these families. In 2017, the American Bar Association (ABA) adopted a resolution supporting the rights of parents with disabilities and calling for states to “enact legislation and implement public policy providing that custody, visitation, and access shall not be denied or restricted, nor shall a child be removed or parental rights be terminated, based on a parent’s disability” (p. 1).

To date, 28 states have introduced or passed legislation to safeguard the rights of parents with disabilities and their children (National Research Center for Parents with Disabilities, 2020). Although the bills vary by state, they generally prohibit discrimination against parents with disabilities, eliminate disability as grounds for termination of parental rights, and require child welfare agencies and family courts to consider how adaptive parenting equipment or supports can alleviate alleged parenting issues. Some bills also prohibit disability-based discrimination by adoption and foster care agencies. For example, in 2018, Colorado passed the Family Preservation for Parents with Disability Act (Co. Rev. Stat. 24-34-805). This legislation prohibits a parent’s disability from serving as the basis for denying or restricting custody, visitation, adoption, foster care, or guardianship. It also requires courts to consider the benefits of providing services and supports when determining custody, visitation, adoption, foster care, and guardianship and mandates the state’s child welfare agency to provide reasonable modifications to parents with disabilities based on individual needs.

Legislative advocacy has been the cornerstone of the disability rights movement (Krahn & Campbell, 2011; Landmark et al., 2017) and offers opportunities to protect the rights of parents with disabilities. Policies concerning parental rights, especially those related to child welfare, custody and visitation, and adoption and foster care, are mostly state-based. Accordingly, state-by-state advocacy to amend legislation is essential. Although state legislative advocacy efforts are rapidly emerging across the United States, existing research has failed to study this phenomenon. In particular, no known studies have examined barriers and solutions to passing state legislation concerning the rights of parents with disabilities. Accordingly, this study has two research questions: (a) What barriers do advocates, attorneys, and legislators encounter related to passing legislation to ensure the rights of parents with disabilities and their children? and (b) What solutions do advocates, attorneys, and legislators identify for successfully passing legislation concerning parents with disabilities and their children? Understanding the experiences of those directly involved in policymaking concerning parents with disabilities is crucial for future legislative advocacy.

Method

Sampling and Recruitment

The study’s inclusion criteria required participants to (a) have had involvement working on legislation related to parents with disabilities (including current involvement if the legislation had not yet passed); (b) be a legislator, legislative staffer, advocate, attorney, or child welfare professional; (c) speak English; and (d) be 18 years of age or older. Legislators and their staff were sponsors of legislation relating to parents with disabilities. The sample included participants from across the United States.

Study participants were recruited using purposive and snowball sampling (Creswell, 2013). Recruitment was conducted through email: Recruitment materials were emailed to disability rights organizations, child welfare system organizations, and legislators in all 28 states where legislation concerning parents with disabilities had been introduced or passed. Such states were identified based on the second author’s ongoing research on the topic. The emails included a description of the study, the research team’s contact information, and a request to forward the recruitment materials to others who may be interested in participating. Follow-up emails were sent. All individuals who contacted the researchers about the study and satisfied the study’s inclusion criteria were interviewed. Information about the study was also shared on social media.

Data Collection

The first and second authors conducted semi-structured, in-depth telephone interviews between November 2017 and April 2019. One researcher conducted each interview. Each interview lasted approximately 1 hr. At the beginning of the interviews, researchers shared information about the study and answered participants’ questions. Verbal informed consent was obtained before the interviews commenced, as approved by the authors’ university institutional review board (IRB). The interviews followed an interview guide, which the research team developed based on a comprehensive literature review and their prior research. Following the interviews, participants were emailed a brief demographic questionnaire. Data collection continued until saturation was achieved and no additional themes emerged. All interviews were audio-recorded and professionally transcribed.

Analysis

Interview transcripts were analyzed iteratively and inductively using conventional content analysis (Hsieh & Shannon, 2005). Each author conducted a line-by-line review of three randomly selected interview transcripts and identified themes and codes. The authors then met and developed a preliminary codebook, which included themes, codes, and definitions.

Interview transcripts were uploaded to the Dedoose Version 8.3.17 web application for qualitative analysis (SocioCultural Research Consultants, 2020). The first author completed line-by-line coding in Dedoose using the codebook. Throughout the coding process, the first and second authors met regularly to discuss and refine themes and codes. Once coding was complete, the second author reviewed the coding, and disagreements in coding were discussed until consensus was reached (Harry et al., 2005; Saldaña, 2016). All authors approved the final codebook.

Results

Participant and Legislation Characteristics

Table 1 shows the interview participants’ characteristics. Most participants were female (71%) and above 50 years of age (57%). All participants identified as White or Caucasian. A plurality of participants had professional degrees (36%), and 16 of the 19 participants worked as attorneys or advocates. Participants worked on legislation in 11 states.

Table 1.

Interviewees’ Demographic Characteristics (N = 19).

Characteristics	n (%)
Professional role^a
Attorney	9 (47)
Advocate	11 (58)
Legislator or legislative staff	2 (11)
Former legislator	1 (5)
Years of professional experience^b
1–5	4 (29)
6–10	3 (21)
11–19	4 (29)
20+	3 (21)
State
Colorado	3 (16)
Idaho	1 (5)
Illinois	2 (11)
Maryland	2 (11)
Massachusetts	2 (11)
Minnesota	1 (5)
Nebraska	2 (11)
Ohio	1 (5)
Oregon	1 (5)
South Carolina	2 (11)
Virginia	2 (11)
Geographic region^c
Northeast (MA, MD)	4 (21)
Midwest (IL, MN, NE, OH)	6 (32)
South (SC, VA)	4 (21)
West (CO, ID, OR)	5 (26)
Age (years)^b
26–30	1 (7)
36–40	2 (14)
41–45	2 (14)
45–50	1 (7)
50–60	2 (14)
Over 60	6 (43)
Race/ethnicity^b
White/Caucasian	13 (100)
Gender^b
Female	10 (71)
Male	4 (29)
Highest level of education^b
Bachelor’s degree	4 (29)
Master’s degree	4 (29)
Professional degree (JD, MD, etc.)	5 (36)
Doctorate degree	1 (7)

Note. Percentages use total of questionnaire respondents.

Categories not mutually exclusive. ^bMissing data due to nonresponse. ^cBased on U.S. Census Bureau.

Study participants had various types of involvement with their states’ legislation: They contributed to or took the lead on drafting bills, lobbied and testified in support of bills, and—in the case of legislators—championed bills in legislative committees. Although all participants worked on legislation that would protect the rights of parents with disabilities, the details of the legislation varied. Bills covered the child welfare system, custody and visitation, and adoption and foster care. Some ensured that parental rights could not be terminated solely based on parental disability, whereas others ensured that disability could not disqualify a parent from being awarded custody. Still others sought funding for supports and adaptive parenting technologies for parents with disabilities.

Twelve participants reported successful passage of legislation in their states, including two participants (from the same state) who discussed the passage of one piece of legislation and their work on a subsequent bill. At the time of the interviews, two participants were working on drafting bills and gathering support, and four participants reported that bills in their states had not yet passed—in some cases, after multiple attempts.

Barriers to Passage of Legislation

Participants described three broad themes indicating barriers to passing state legislation concerning the rights of parents with disabilities (see Table 2): (a) legislators’ pejorative attitudes toward parents with disabilities, (b) external opposition, and (c) legislative barriers. These findings are described below using case examples and participant quotes.

Table 2.

Barriers to Passing Legislation Protecting the Rights of Parents With Disabilities: Themes and Definitions.

Barrier	Definition
Legislators’ pejorative attitudes toward parents with disabilities	Legislators unwilling to support legislation protecting the rights of parents with disabilities due to negative attitudes about parents with disabilities
External opposition	Opposition to legislation protecting the rights of parents with disabilities from state child welfare agencies and state bar associations
Legislative barriers	Difficulty finding committee assignments, voting bills out of committee, or bringing bills to a vote

Legislators’ pejorative attitudes toward parents with disabilities

Legislators’ assumptions that people with disabilities could not parent were a significant barrier to passing legislation that would protect the rights of parents with disabilities, as these legislators could be hesitant or unwilling to support bills protecting the rights of parents with disabilities. For example, one advocate located in the South had difficulty finding legislative sponsors because “legislators . . . already have built-in biases where they’re not entirely sure . . . what they should think of disabled parents.” Similarly, an attorney who worked in the Midwest noted that legislators could not imagine how a parent with a disability could care for a child. That attorney went on to remark, “They worry that, ‘Well, how would somebody who is [disabled] raise a child, know where the child is all the time . . . or rescue it if it was in danger?’”

Furthermore, many participants encountered legislators who were unwilling to support legislation that included parents with intellectual, developmental, psychiatric, or substance use disabilities. An advocate from the Midwest said, “most legislators are okay with physical disability, they’re okay with blindness, they’re okay with deafness,” but they were not comfortable with protecting the rights of parents with “intellectual disability [or] psychiatric disability.” Legislators’ reluctance to support legislation that included parents with intellectual, developmental, psychiatric, or substance use disabilities could hinder passing legislation. An attorney in the South, for example, said that a “misunderstanding about the abilities of people with intellectual disabilities and mental illness” impeded the passage of legislation in her state.

External opposition

Participants identified external opposition to legislation concerning the rights of parents with disabilities as a barrier. Some participants reported that their states’ child welfare agencies opposed such legislation by voicing disagreement with a bill’s language as it was being drafted, or arguing that a bill contradicted existing law. In fact, some participants reported that their state’s child welfare agency “was the only opposition we got.” In several instances, state child welfare agencies opposed legislation due to concerns about, as an advocate in the West said, “striking the right balance between the parents’ rights and the child rights.” In other cases, state child welfare agencies were opposed for safety and liability reasons. An advocate from the South worked on a bill that the child welfare system opposed because of concerns that “they’re going to be held responsible if something goes wrong. They make the decision to let a person with a disability adopt a child . . . [or to] leave a child in a family with a parent who has a disability.”

Similarly, some participants faced opposition from their states’ bar associations. One advocate in the South said his state’s bar association opposed anything but a minor “six-word change” to the law. After the bar association announced its opposition, legal and disability organizations that had previously supported the bill “buckled under” and stopped fighting for more substantive change. In other instances, bar associations opposed legislation because it included all disability types. An attorney from the Midwest, for example, said that her state’s bar association pushed back on legislation because it included parents with substance use disabilities and “they felt they would not be able to take appropriate action against any disabled person who happened to have a substance abuse issue.” Despite the bill’s supporters having “carefully explained that substance abuse is only considered a disability if the person is actively in recovery,” the bar association remained opposed.

Legislative barriers

Participants described legislative barriers to passing bills protecting the rights of parents with disabilities, including difficulties in finding committee assignments, and challenges making the legislation a priority for committees and their state’s legislative leadership. An advocate in the Midwest said it was difficult to find a committee assignment for the bill because the legislature was “captivated” by an unrelated piece of challenging legislation that was “taking all the air out of anything else.” The advocate had difficulty securing legislators’ support because they had prioritized other issues. Participants also reported problems getting legislation voted out of committees. For example, an attorney from the Northeast said, “The legislation has gotten stuck in committee each year . . . because of it not being a top priority.” An advocate from the South similarly noted that despite “pretty reasonable support” for the legislation, the practice of the committee in which the bill was introduced was not to pass a bill during its first year: “Nothing should be changed that fast.” In addition, some participants had challenges with making bills protecting the rights of parents with disabilities a priority for legislative leadership. A former legislator in the Northeast had difficulty bringing the bill to a vote for this reason, despite it having been “very well received” all 3 times it was introduced. In his experience, a bill “will advance very quickly if the Speaker views it as a priority . . . it has everything to do with whether or not something is a priority to one particular person who is in charge.”

Solutions to Passing Legislation

Participants described eight broad themes indicating solutions to passing state legislation concerning the rights of parents with disabilities (see Table 3). The solutions are as follows: (a) cross-disability advocacy, (b) education, (c) relationship-building, (d) bipartisanship, (e) support from state and national organizations, (f) strong sponsors, (g) incrementalism, and (h) model legislation. The solutions broadly respond to the barriers described above, and some overlap. These findings are described below using case examples and participant quotes.

Table 3.

Solutions for Passing Legislation to Protect the Rights of Parents With Disabilities: Themes and Definitions.

Solutions	Definition
Cross-disability advocacy	Broad advocacy coalitions, including cross-disability advocacy organizations, demonstrate wide support and can help to allay legislators’ concerns
Education	Research and data on the need for legislation and testimony from parents with disabilities can challenge legislators’ preconceptions about parents with disabilities
Relationship-building	Building relationships with child welfare agencies and state bar associations can help to avert their opposition or transform it into support
Bipartisanship	Bipartisan support can demonstrate commitment and overcome opposition
Support from state and national organizations	Testimony and lobbying from advocacy groups can gain legislators’ buy-in and help bills to progress
Strong sponsors	Legislative sponsors who champion a bill and work to make it a priority can help it to progress
Incrementalism	Less-comprehensive bills may be easier to pass and can be stepping stones to continuing legislative change
Model legislation	Adapting model bills to state-specific needs can result in stronger legislation

Cross-disability advocacy

Many participants identified cross-disability advocacy, including people with disabilities of all types, as essential to passing legislation protecting the rights of parents with disabilities. These participants recommended that advocates and legislators work with broad advocacy coalitions that included cross-disability advocacy organizations. To demonstrate wide support for legislation to protect the rights of parents with disabilities, a legislative staffer from the Midwest suggested working “with as many partners as you can in . . . parental rights law or practice law . . . and from the disability rights community.” Working with a cross-disability coalition could also give legislators many opportunities to address their concerns about parenting with disability: legislators could meet “with someone from the deaf community . . . the blind community . . . the intellectual developmental disabilities community . . . [and] maybe the individual from the deaf community doesn’t get the point across, but the person with mobility disability does.”

Participants also emphasized that legislation must safeguard the rights of all parents with disabilities rather than only certain disability types and that cross-disability advocacy could support that goal. An advocate from the South noted that building cross-disability advocacy coalitions could help ensure that proposed legislation would be drafted to protect all parents with disabilities by ensuring “that they’re understanding, you know, the laws and the impact . . . on all parents with all types of disabilities.”

Education

Participants found that educating legislators about parenting with disability and the adverse experiences parents with disabilities have in the child welfare system helped demonstrate the need for legislation to protect parents’ rights and challenged legislators’ preconceived notions about parents with disabilities. Participants discussed educating legislators using research, data, and testimony from parents. An attorney in the South, for example, said that supporters of her state’s legislation convinced legislators of the need for legislation to protect the rights of parents with disabilities by going “through a review of some [state] cases to show, yes, there is bias . . . here’s how we know it is a problem in [our state].” Similarly, an advocate from the West noted that background research on “the caselaw from the ADA stuff as it related to dependency and neglect action . . . probably had the most significant impact of anything” when it came to passing legislation in her state. Research and data were essential to demonstrating the need for legislation because, as an attorney from the South said, “Legislators really want to pass legislation, [but] not about speculative problems . . . let’s not fix a problem that’s not broken.”

Parent testimony helped to challenge legislators’ assumptions and biases about parents with disabilities. A legislator from the West emphasized that “personal stories help a lot” in gaining legislators’ support because they can help to correct legislators’ stereotypes about parents with disabilities: “The more that you can challenge people’s expectations and beliefs by showing them . . . the real story of people, it makes a huge difference.” Likewise, an advocate from the South said that parents “who’ve never been in the system . . . just parents with disabilities” testified in support of her state’s legislation, which “was very powerful because, you know, they talk about . . . the fear that they’ve always had of somebody just coming up to them and taking their children because of the disability . . . that weighed very heavy on the legislators.” Parent testimony also helped put a face to the issue so legislators could see the families affected by their decisions. An advocate from the South described a mother who was a wheelchair user who “would bring [her] children to the hearings . . . the little guys were dressed in suits and ties. The little girls were dressed up. . .Those kinds of faces, it’s very hard to demonize.” The advocate noted the importance of legislators seeing families headed by parents with disabilities.

Relationship-building

Participants explained that building relationships with their state’s child welfare agencies or bar associations could help overcome or avert their opposition. An advocate from the South explained that discussing the goal of the legislation with her state’s child welfare agency helped the agency understand that “they’re responsible to look at every single parenting the same way and to treat it equally,” irrespective of parental disability, and that “of course none of us want a child put in danger.” As a result of having built mutual respect and understanding, the second time the bill was introduced, the agency was “supportive of the parents.” Likewise, an attorney from the Midwest explained that having a relationship with the state’s bar association was “crucial” for gaining their support. Although the bar association’s committee on family law was opposed to the legislation, an attorney was able to convince two other committees “to come out in favor of the legislation, which meant that the bar association stayed neutral.”

Bipartisanship

Many participants explained that parenting rights transcended political party in their states’ legislatures and described how bipartisan support could help to avert opposition and move bills toward passage. Participants pointed out that both parenting and disability are issues that, as an advocate from the Midwest said, are “beyond something of a party nature” and are important to legislators across the political spectrum. Advocates from the South found that “the human rights aspect of it really resonates with the Democrats, and I think the parenting rights resonates with the Republicans,” as did “the [state’s] financial burden of . . . having cases that are open . . . for no reason in particular besides the parent has a disability.”

Bipartisan support helped bills to pass in some states. Bipartisan bill sponsorship was “extremely helpful” for averting or overcoming opposition because it showed, according to an advocate from the South, “that [legislators] were committed to it.” Strong bipartisan support also helped bills protecting the rights of parents with disabilities to pass in legislatures where bringing bills to a vote could otherwise be more contentious. An attorney from the Midwest noted that partisan disagreement on other issues helped propel her state’s legislation to passage: “I think the legislature was ready to do anything that was reasonable, that had bipartisan support.”

Support from state and national organizations

Participants described how testimony and lobbying from state and national advocacy organizations helped to move bills forward despite opposition. One attorney from the South said that state disability rights groups’ testimony helped secure legislators’ support because “they have credibility.” Another attorney from the South said state and national disability advocacy organizations “carried the torch” for the bill that passed in her state by requesting amendments to ensure that it covered all parents with disabilities. Having advocacy organizations present at the legislature for committee hearings could make a difference as well. An advocate from a state disability organization in the Midwest said that in addition to providing testimony on the bill, “I think the fact that we were there, that we cared enough to actually go down to the state capital on two separate occasions to witness the committee hearings, I think that helped a lot.”

Strong sponsors

Participants indicated that legislative sponsors who championed a bill and worked to make it a legislative priority could help overcome legislative barriers. An advocate in the West said that the bill’s state Senate sponsor shared the story of the challenges a parent with disabilities in his state had faced, which “made a lot of impact on legislators” and helped gain their support for the bill. An advocate from the South described how a strong sponsor could help turn opposition into support: When her state’s child welfare agency tried to oppose the legislation, “the sponsor of the bill came and said . . . ‘What you guys are doing, you are discriminating. You are violating the rights of these people and you need to figure [it] out.’” Afterward, the agency both withdrew its opposition and “help[ed] us lobby for the bill.”

Strong sponsors could also help overcome challenges with making bills to protect the rights of parents with disabilities a legislative priority. An attorney from the Midwest said that the bill’s sponsor asked the speaker of their state’s unicameral legislature to take on the bill as one of his projects for the legislative session, “and so, because it was his priority, then it got on the calendar and it got read the right number of times, and it got passed.”

Incrementalism

Participants noted that incremental strategies, such as putting forth less comprehensive bills that were easier to pass or breaking large bills into multiple smaller ones, could help address challenges in the legislature. An advocate the South explained that her state had previously passed legislation protecting the rights of blind parents, which helped lay the groundwork for the passage of a subsequent cross-disability bill that protected all parents with disabilities. An attorney from another Southern state discussed the importance of passing initial legislation to pave the way for more comprehensive legislation later on: “With these legislative initiatives, you might have to do it in stages. You might not get everything you want . . . the first time around.” Breaking large bills into several smaller pieces of legislation could also facilitate passage. An advocate from the West described how, after 5 years, legislation passed in his state only after it was split into multiple smaller bills: “We broke it into two different pieces . . . each piece included one bill. So the first piece was adoption, guardianship in one bill. And the next bill included divorce and separation.” Other participants emphasized the importance of being willing to compromise on provisions. A legislator from the West said, “We passed a bill around dependency, which was not everything that we wanted, but it was something . . . it’s better to get something than to get nothing.” However, participants also cautioned that incremental change must still be substantive. An advocate from the South explained that her state’s bar association opposed all but a minimal change to the law, which would have included “no remedies, no process, no anything” for ensuring that the rights of parents with disabilities would be protected. Wary of losing momentum to push for more substantive change, advocates “made a conscious choice” not to accept the bar association’s compromise.

Model legislation

Participants found it helpful to use and adapt model legislation from advocacy organizations—that is, sample legislative text that provides a guide for drafting bills—when putting together bills in their states. An attorney from the Midwest suggested that “going in with a sample bill is a really good idea, sample language.” Participants also recommended adapting legislation from other states. An advocate and a legislator from the West recommended referring to legislation that had already been passed in other states, and revising any relevant language to state-specific needs, rather than starting from scratch. An attorney in the Midwest had worked on adapting model legislation to address concerns from her state’s child welfare agency. This included making “compromises . . . that strengthened the bill”—such as incorporating training for child welfare professionals—and as a result, “We now have no opposition to the bill.” In addition, an attorney from the Northeast found using model bills “important in terms of making sure that your legislation is focused on compliance with the ADA.”

Discussion

This study offers novel and valuable insights into the experiences of advocates, attorneys, and legislators involved in passing legislation aimed at protecting the rights of parents with disabilities and their children. Participants reported three broad barriers to passing such legislation, including (a) legislators’ pejorative attitudes toward parents with disabilities, (b) external opposition, and (c) legislative barriers. In response to these barriers, participants provided eight solutions, including (a) cross-disability advocacy, (b) education, (c) relationship-building, (d) bipartisanship, (e) support from state and national organizations, (f) strong sponsors, (g) incrementalism, and (h) model legislation. Understanding these barriers and solutions can inform future policymaking related to the rights of parents with disabilities, and disability rights broadly.

Limitations

Although this study provides important evidence about barriers and solutions to passing legislation aimed at protecting the rights of parents with disabilities, there are limitations. First, because all participants were White, and most identified as female and above 60 years of age, the sample lacks diversity and may not reflect the experiences of all individuals involved in legislation relating to parents with disabilities. Second, the sample included participants from only 11 of the 28 states that have introduced or passed legislation relating to parents with disabilities. Future research should aim for greater geographic diversity. Third, despite substantial efforts to recruit legislators and legislative staff, most participants were advocates or attorneys. Future research should seek to include a larger sample of legislators and legislative staff to better understand the experiences of those directly involved in policymaking. Fourth, this study was voluntary, and individuals who chose to participate may have had experiences that are not representative of others who did not participate. Fifth, recruitment was conducted primarily through contacting disability rights organizations, child welfare system organizations, and legislators in states where legislation concerning parents with disabilities was introduced or passed. Advocates and attorneys not directly connected to these organizations likely were not included. Finally, the study was based on self-reporting, and participants’ responses were not verified, which may have resulted in recall bias and social desirability bias.

Implications for Policy, Practice, and Research

Notwithstanding the study’s limitations, the findings have important implications for policymaking, practice, and research concerning legislative efforts to ensure the rights of parents with disabilities and their children. Although all participants reported encountering barriers, they also all offered essential insights and solutions. These lessons can inform future legislative advocacy relating to the rights of parents with disabilities. These insights also have implications for disability rights advocacy broadly.

Coalition-building, both within and outside the disability community, has been vital to the disability rights movement and appears essential to policymaking regarding parents with disabilities. For example, passage of the ADA required cross-disability advocacy and engagement with other relevant stakeholders, including civil rights, labor, and religious groups, and the business community (Davis, 2016; O’Day & Goldstein, 2005). In this study, participants similarly emphasized the importance of cross-disability advocacy and coalition-building with other relevant stakeholders. Several participants explained that bills that protected the rights of parents with diverse disabilities were more likely to garner support from disability rights organizations than those that only applied to certain types of disabilities. Furthermore, participants noted that building relationships with other stakeholders early in the process, such as with the child welfare and legal communities, can help curtail external opposition as the bill progresses through the legislature. Some participants explained that they established a coalition of various stakeholders to draft the initial legislation. This buy-in led to state and national disability, child welfare, and legal organizations testifying in support of legislation.

Likewise, findings from this study suggest a crucial role for researchers. Pejorative attitudes relating to the capabilities of parents with disabilities were a notable barrier to the passage of legislation in several states. Parents with disabilities often contend with presumptions that they will mistreat their children, neglect them due to incompetence, or pose a risk to their development (Andrews & Ayers, 2016; Malacrida, 2009). One way to counter these negative attitudes may be with research that demonstrates that parents with disabilities are often capable of caring for their children. Indeed, participants noted the need to educate legislators about parents with disabilities, including using data and research. Specifically, research can inform legislators about how parents with disabilities can safely raise children. Public health researchers have discussed the importance of collaboration between the disability and public health communities, explaining that the disability community brings organized advocacy and emphasis on the “lived experience” of disability, whereas public health contributes resources and scientific rigor (Krahn & Campbell, 2011). Child welfare and legal scholars should similarly engage with the disability community to promote evidence-based policies. Together, these communities can create research and synthesize findings for legislators.

Disability rights organizations, such as centers for independent living (CILs) and the protection and advocacy system (P&As), should play a more active role in policymaking relating to parents with disabilities. Systems advocacy, including educating and advising legislators and policymakers about people with disabilities, is a core service of both CILs and P&As (Administration for Community Living, 2019; National Council on Independent Living, n.d.; National Disability Rights Network, n.d.; O’Day, 2006). Although nonprofit organizations face legal restrictions on engaging in lobbying activities, they can still significantly impact policymaking (Mellinger & Kolomer, 2013; Vaughan & Arsneault, 2008). Some participants noted that CILs and P&As were vital in drafting legislation and testifying at hearings, whereas others wished they had taken more active roles.

This study’s findings also underscore the need for people with disabilities to have greater opportunities to engage in legislative advocacy (Landmark et al., 2017). In this study, personal stories from parents with disabilities were often vital to getting legislation passed. However, people with disabilities have historically experienced barriers to civic engagement, including legislative advocacy, leading to policies being developed for people with disabilities rather than with people with disabilities (Braddock & Parish, 2001; Donoghue, 2003; Garcia-Iriarte et al., 2008). Therefore, more attention should be devoted to building the next generation of leaders in the disability rights movement, who can continue the work of past advocates while leading the movement into previously ignored areas, such as parenting rights (Foster-Fishman et al., 2007). People with disabilities need to learn about successful strategies for legislative advocacy, including a general understanding of the legislative process and how to interact with politicians and develop effective communication strategies (Huntington, 2001; Jackson-Elmoore, 2006). Training on legislative advocacy should be cross-disability, and there should be a focus on including people with disabilities from historically marginalized communities, who often have fewer opportunities for civic engagement (Fridkin et al., 2006).

Relatedly, resources should be available for advocates and legislators about passing legislation that protects the rights of parents with disabilities. Several participants noted the importance of model legislation, such as that available from the National Council on Disability or the National Federation of the Blind. More recently, the National Research Center for Parents with Disabilities published toolkits on their website for advocates and legislators about fundamental principles to include in legislation as well as strategies for successfully passing bills (Powell & Rubinstein, 2020a, 2020b). Disability rights advocates, legal professionals, and child welfare professionals should collaborate to develop additional resources.

Finally, findings from this study have implications for future research. Few studies have examined legislative advocacy among people with disabilities (Landmark et al., 2017). Although this study offers insights into potential barriers and solutions, far greater understanding is needed. Studies should elucidate the role people with disabilities have in legislative advocacy and how people with disabilities are being trained and supported as they engage with policymaking. In addition to understanding legislative advocacy among people with disabilities broadly, future research must continue to explore policymaking relating to parents with disabilities and their children. For example, in-depth analysis is needed of the bills that states introduce and pass. Follow-up studies are also needed to assess the effectiveness of legislation to protect the rights of parents with disabilities and how states implement these policies. Future research should also explore solutions that directly address specific barriers to passing legislation that protects the rights of parents with disabilities.

Conclusion

This study provides evidence from advocates, attorneys, and legislators on barriers and solutions to passing state legislation to protect the rights of parents with disabilities. Although barriers persist, most participants reported the successful passage of legislation in their states. Study findings indicate solutions that could help to address the barriers participants identified. With broad cross-disability coalitions, including state and national disability organizations, relationship-building with relevant agencies, education of legislators with research, data, and parent testimony, bipartisan legislative champions, and willingness to make incremental progress, ongoing efforts to pass legislation protecting the rights of parents with disabilities should be able to succeed.

Supplemental Material

sj-docx-1-dps-10.1177_10442073211006394 – Supplemental material for Barriers and Solutions to Passing State Legislation to Protect the Rights of Parents With Disabilities: Lessons From Interviews With Advocates, Attorneys, and Legislators

Supplemental material, sj-docx-1-dps-10.1177_10442073211006394 for Barriers and Solutions to Passing State Legislation to Protect the Rights of Parents With Disabilities: Lessons From Interviews With Advocates, Attorneys, and Legislators by Sasha M. Albert, Robyn M. Powell and Jack Rubinstein in Journal of Disability Policy Studies

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

This research is funded by a grant from the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living, and Rehabilitation Research, Award Number: 90DP6E0001-01-00 and The Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University.

ORCID iD

Robyn M. Powell

Supplemental Material

Supplementary material for this article is available on the Journal of Disability Policy Studies website with the online version of the article.

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