Abstract
BACKGROUND:
To support adults with intellectual and developmental disabilities to experience a better-quality life, national, state, and local governments offer a variety of long-term services and supports. However, the responsibility of qualifying for and accessing long-term services and supports often falls outside of these systems and on the adults with intellectual and developmental disabilities and their families.
OBJECTIVE:
Given the family’s role in securing long-term services and supports, this qualitative study investigated the perspectives of families of adults with intellectual and developmental disabilities and their experiences learning about and qualifying for Home and Community-Based Services Waivers, a common funding source for long-term services and supports.
METHODS:
Relying upon qualitative methods associated with grounded theory, six mothers of adults with intellectual and developmental disabilities from three states were interviewed.
RESULTS:
Analysis of interview transcripts revealed five themes addressing: families’ reasons for seeking HCBS Waivers, families’ experiences learning about HCBS Waivers, frustrations encountered, families’ suggestions for change, and parents’ characteristics and roles.
CONCLUSION:
Interview results provided a nuanced understanding of participants’ perspectives and experiences, highlighting their active participation, emphasizing the challenges they have encountered, and uncovering their suggestions for change. Implications for research and practice are discussed.
Keywords
Introduction
Like all citizens, adults with intellectual and developmental disabilities deserve the opportunity to experience a good quality of life; one in which they can live, learn, work, and socialize just like everyone else. However, to achieve a fuller, richer life in the community, many adults with intellectual and developmental disabilities require personalized supports, defined as “resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning” (Luckasson et al., 2002, p. 151). Recognizing this, national, state, and local governments within the United States provide a variety of long-term services and supports intended to assist adults with intellectual and developmental disabilities to participate in typical life activities in integrated community settings.
Home and community-based services waivers
In the United States, Home and Community-Based Services (HCBS) Waivers are a primary source of long-term services and supports available to adults with intellectual and developmental disabilities (Braddock et al., 2013). In fact, HCBS Waivers financed over 75% of all publicly funded long-term services and supports for people with intellectual and developmental disabilities during fiscal year 2009 (Braddock et al., 2011). HCBS Waivers are not a standardized program of supports and services. Rather, they are a funding mechanism that support people with intellectual and developmental disabilities to access resources such as habilitation training, respite care, case management, supported employment, therapies, and behavior management supports (Rizzolo et al., 2013). HCBS Waivers are state-specific, with a considerable amount of variation existing around available funding and services (Hemp & Braddock, 2003).
Impact of HCBS waivers
Overwhelmingly, long-term services and supports funded by HCBS Waivers positively impact the quality of life of adults with intellectual and developmental disabilities. For example, having access to direct support providers (i.e., staff responsible for the provision of long-term services and supports) impacts the capacity and opportunity of adults with intellectual and developmental disabilities to access the community, experience security and safety, and maintain intimate relationships (Friedman, 2018). A family’s quality of life is also enhanced when their family member with intellectual and developmental disabilities is accessing long-term services and supports (Gill & Renwick, 2007). A study of the HCBS Waiver Program in Illinois found that families receiving long-term services and supports had fewer financial expenses, improved health care access, and more social and leisure satisfaction compared with families who were not receiving long-term services and supports (Caldwell, 2006).
Unsurprisingly, a lack of access to long-term services and supports can negatively impact the quality of life of adults with intellectual and developmental disabilities and their families. For instance, research has shown that adults with intellectual and developmental disabilities who lack daytime activities, often funded by HCBS Waivers, are more likely to have behavioral and health problems (Taylor & Hodapp, 2012). Adverse outcomes can be experienced by families of adults with intellectual and developmental disabilities as well. Findings from a survey of family caregivers revealed that 88% of families experienced physical strain and 81% experienced financial strain as a result of unrelenting caregiving responsibilities associated with a lack of access to respite and support services (Hewitt et al., 2013).
Access to HCBS waivers
Although research demonstrates the value of long-term services and supports, many adults with intellectual and developmental disabilities and their families do not experience these benefits. Research suggests that only one in four adults with intellectual and developmental disabilities access formal long-term services and supports (Braddock et al., 2015; Larson et al., 2015). As of 2017, over 473,000 people with intellectual and developmental disabilities were on waiting lists in 36 states to receive HCBS Waivers (Musumeci et al., 2019). Not only do they lack access to HCBS Waivers, but many adults with intellectual and developmental disabilities must wait for long periods of time to obtain access. The average waiting period to access HCBS Waivers is 5.5 years, with waits lasting as long as ten years in certain states (Musumeci et al., 2019).
Numerous factors impact access to long-term services and supports. One major contributing factor relates to procedural challenges. There is no single agency responsible for the provision of long-term services and supports to adults with intellectual and developmental disabilities. Rather, long-term services and supports are provided through multiple adult service delivery systems (Kraemer & Blacher, 2001). Additionally, adults with intellectual and developmental disabilities are not entitled to these supports by virtue of their disability status (i.e., a prior diagnosis of disability). Instead, long-term services and supports are driven by eligibility requirements, which not only vary by state but also vary within states. These complex and subjective factors converge to complicate the process of accessing HCBS Waivers for adults with intellectual and developmental disabilities and their families.
Family involvement
The current HCBS Waiver landscape has a number of ramifications for the involvement of families of adults with intellectual and developmental disabilities. In this study, the terms families and parents are used broadly to describe diverse family structures, including close relationships with people who share responsibilities and care for its members, not just traditional heteronormative notions of mother and father. The onus of responsibility for finding, coordinating, and maintaining long-term services and supports tends to fall on families (Burke et al., 2016). Not only are families responsible for coordinating long-term services and supports, but long waits for HCBS Waivers often mean families are responsible for addressing unmet service needs on an ongoing basis. In fact, family members are a primary, and frequently unpaid, source of support for people with intellectual and developmental disabilities, assisting with tasks that promote community living and integration across the life course (Grossman & Magana, 2016).
Given their role in securing and managing the provision of long-term services and supports, families of adults with intellectual and developmental disabilities have frequently been the subject of research. Researchers have examined parents’ expectations, preferences, and concerns related to the future of their children with disabilities (e.g., Blustein et al., 2016), as well as their understanding of the roles they play in facilitating post-school opportunities (e.g., Bianco et al., 2009). Researchers have also sought to understand parents’ knowledge of available resources (e.g., Gilson et al., 2017) and identify their preferred methods for receiving information about available services (e.g., Heller & Caldwell, 2006). Considering the critical role of families in the life trajectories of their adult children with intellectual and developmental disabilities, as well as the numerous and complex barriers to long-term services and supports, understanding families’ perspectives and experiences is critical.
Research questions
Although families of adults with intellectual and developmental disabilities have been the subject of much research related to long-term services and supports, one aspect that has not been considered is families’ perspectives and experiences when learning about and qualifying for HCBS Waivers. The purpose of this study, as such, was to understand the perspectives and experiences of families of adults with intellectual and developmental disabilities when learning about and qualifying for HCBS Waivers. Using qualitative methods associated with grounded theory, this study addressed the following research questions: What factors influence families of adults with intellectual and developmental disabilities to access HCBS Waivers for their family member? What are the experiences of families of adults with intellectual and developmental disabilities when learning about HCBS Waivers? What are the experiences of families of adults with intellectual and developmental disabilities when qualifying for HCBS Waivers?
Method
To address this study’s research questions, we applied a qualitative approach, interviewing families of adults with intellectual and developmental disabilities to explore their perspectives and experiences learning about and qualifying for HCBS Waivers. In the following section, we describe the study’s essential features, including participants, recruitment, interviews, and data analysis.
Participants
Participants included six mothers of adults with intellectual and developmental disabilities who were accessing HCBS Waivers in three states, including Illinois (n = 1), Kansas (n = 4), and South Dakota (n = 1). Participants lived in both rural (n = 2) and suburban (n = 4) areas. Participants’ adult children ranged in age from 23 to 33 years old and were diagnosed with a variety of disabilities, including intellectual disability, Autism, and Williams’ syndrome. Participants’ adult children had been accessing HCBS Waivers for varying lengths of time, ranging from four to 19 years. Five of the six adults with intellectual and developmental disabilities had been placed on waitlists prior to receiving HCBS Waivers.
Recruitment
Prior to recruitment, we received approval from the university’s Institutional Review Board (IRB). Upon obtaining IRB approval, participant recruitment commenced. We undertook a multi-pronged approach to recruit participants. First, we spoke with an expert on HCBS Waivers regarding states to target for recruitment. Based on this conversation, participant recruitment occurred in five states: Colorado, Illinois, Kansas, New Mexico, and South Dakota. These states were recommended because of: (a) the types of available HCBS Waivers, (b) the quality of services supported by HCBS Waivers, and (c) the researchers’ connection to potential study participants. Next, we emailed recruitment materials (i.e., a flyer, an email template, and a sample social media post) to (a) community-centered boards, (b) state parent training and information centers, and (c) parent advocacy organizations. We contacted a total of 42 organizations from October to December of 2018. We requested that organizations disseminate recruitment materials to families of adults with intellectual and developmental disabilities. Recruitment materials instructed interested participants to contact the study’s first author. Upon hearing from interested families, we shared consent forms and scheduled one-on-one interviews. All families who expressed interest and met the study’s inclusion criteria participated in one-on-one interviews conducted by the study’s first author. Additionally, we connected with community stakeholders within one of the study’s focus states, Kansas, and requested that they share recruitment materials with potentially eligible participants. Finally, we ended each interview by asking participants to share recruitment materials with their contacts meeting the study’s inclusion criteria.
Interview procedures
We relied upon qualitative methods associated with grounded theory to guide data collection and analysis (Charmaz, 2009). Using this approach, directed yet open-ended questions allowed for deep inquiry around emerging themes (Bhattacharya, 2017). One-on-one interviews were the primary method of data collection. We developed a semi-structured interview protocol to ensure that interviews covered the study’s intended topics. Questions addressed the topics of learning about HCBS Waivers (i.e., Why did you choose to access HCBS Waiver services on your son or daughter’s behalf?) and qualifying for HCBS Waivers (i.e., Can you describe the experiences you went through to qualify for HCBS Waiver services?). Open-ended interview questions were used to ensure that families’ perspectives were captured (Rubin & Rubin, 2005). Interviews were conducted in-person and via Zoom, an online videoconferencing system. On average, interviews lasted 43 minutes, ranging from 28 minutes to 54 minutes.
Data analysis procedures
To analyze interviews and identify emerging themes, we utilized a three-step process: (1) prepare data; (2) explore data; and (3) reduce data (Bazeley, 2013). During the “prepare data” step, we transcribed each digitally recorded interview and uploaded these documents into Dedoose (8.1.21), a qualitative analysis software package. During the “explore data” step, the first author actively engaged with data by writing research journal entries and memos. The journal entries and memos included thoughts and reflections regarding the collected data. During the “reduce data” step, we coded transcriptions using a constant comparative approach with a combination of open coding to identify initial codes emerging from participants’ own words and axial coding to combine related codes and construct final code names and definitions (Corbin & Strauss, 2008). Throughout each stage of coding, we made decisions through consensus. For any disagreement about codes or definitions, we shared our rationale for coding and/or critique of coding decisions until an agreement was reached. Given the multi-stage process we used to incorporate new codes and revise existing ones, disagreements were minor and became less frequent as we progressed to the later stages of coding.
Findings
The purpose of this study was to understand the perspectives and experiences of families of adults with intellectual and developmental disabilities when they learned about and qualified for HCBS Waivers. To accomplish this, we conducted semi-structured interviews with six mothers of adults with intellectual and developmental disabilities from three different states. Interviews revealed a total of eleven codes, which were condensed into five themes addressing: (a) reasons for seeking HCBS Waivers, (b) learning about HCBS Waivers, (c) frustrations, (d) suggestions for change, and (e) families’ characteristics and roles. In the following sections, we discuss findings associated with each revealed theme.
Reasons for seeking HCBS waivers
A primary focus of the semi-structured interview questions was to understand families’ reasons for seeking HCBS Waivers on behalf of their son or daughter with intellectual and developmental disabilities. Throughout their responses, participants described seeking HCBS Waivers to meet their son’s or daughter’s needs, as well as to access financial support.
Meeting their son’s or daughter’s needs
Throughout the interviews, participants described seeking HCBS Waivers to meet their son’s or daughter’s immediate needs. Catherine credited a change in her son’s medical conditions as the reason for applying. Another mother, Susan, attributed accessing the HCBS Waiver to her son eloping, or unexpectedly leaving a safe area or responsible caregiver. As a single working mother, Susan needed support to ensure her son’s safety. She shared, “We were very fortunate that he was doing some things, that he was eloping ... so we were able to get crisis funding.”
Participants also identified accessing HCBS Waivers to meet their son’s or daughter’s future needs. Upon learning about the HCBS Waiver, Diane felt that her son did not really need the services. However, another family encouraged her to apply, stating, “you may need it in the future.” Similarly, Liz reacted to learning about the HCBS Waiver by saying, “oh there are other parents who need this more, you know families who really need it. We are fine, and we don’t need this.” Again, another family encouraged her to apply, noting “the key is that he will have this service when he is an adult, and he will need it.”
Accessing financial support
Throughout the interviews, participants described seeking HCBS Waivers to receive financial support. When applying for the HCBS Waiver, Zoe’s family was experiencing financial strains. She shared, “my husband was working for the sheriff’s department and law enforcement officers don’t make a boatload of money. And I was, I was actually a legal secretary and ummm so uh you know it came in handy because we weren’t making a lot of money.” Another mother, Catherine, attributed her ability to work to the services and supports available through the HCBS Waiver. She shared, “if he didn’t have that, I wouldn’t be able to work. Flat out. And if I wasn’t working, the bills wouldn’t get paid ... quite frankly it would be devastating.” Financial support emerged as an important aspect of HCBS Waivers that highlighted the financial strain of supporting adults with intellectual and developmental disabilities.
Learning about HCBS waivers
Another focus of the semi-structured interview questions was to understand families’ experiences learning about HCBS Waivers. Throughout their responses, participants described learning about HCBS Waivers from professionals, as well as from other parents.
Professionals
Although many participants commented on the lack of information they received from professionals, a few described learning about HCBS Waivers from professionals. Danae indicated that she learned about HCBS Waivers from a group of professionals who presented to a parent support group she attended. She shared, “basically I met people who told me how I needed to be applying for that if I wanted to get services for him.” Susan learned about HCBS Waivers from her own therapist. During a counseling session, the therapist asked, “Is he on the waitlist for the waiver?” This question prompted Susan to learn more about the HCBS Waiver. Although participants learned about HCBS Waivers from professionals, none of their experiences reflected a systematic method of reaching all families who may qualify. Additionally, none of the participants identified learning about HCBS Waivers from school staff.
Other parents
The majority of participants described learning about HCBS Waivers from other parents. As one participant noted, families are “the experts in this whole system.” Liz recalled a time when she was voicing some concerns about service availability to another parent. Upon hearing Liz’s concerns, the parent informed her about the HCBS Waiver. Although she originally learned about HCBS Waivers from professionals, Danae described turning to other parents for additional support. She shared, “it was at those meetings that I would ask the questions about what do I need to do and how can I get help. And so, I had the one-on-one help.”
Frustrations
Although not a focus of the semi-structured interview questions, a prominent theme related to the frustrations experienced by families when learning about and qualifying for HCBS Waivers. Interview results addressed: (a) a lack of clear information, (b) a deficit-driven process, (c) interactions with professionals, and (d) difficulties with staff.
Lack of clear information
Throughout the interviews, many participants mentioned the lack of clear information available about HCBS Waivers. For example, Susan noted, “the system is not set up for people to fully understand.” Danae shared “it is kind of like a secret that isn’t given out to parents very easily.” Participants also commented on the complex, multi-stepped process of qualifying for services. Recounting her experience qualifying for services, Terry noted, “you go in and you get SSI [Supplemental Security Income] and then you get Medicaid, but that doesn’t mean that you get the waiver services.” Zoe stated, “it shouldn’t take a bachelor’s degree or a master’s degree to understand this (process)”
Deficit-driven process
One recurring frustration related to the deficit-driven process of qualifying for HCBS Waivers. Liz shared, “you know, the process is everything that the individuals do that is deficit-driven ... I mean I get how you have to qualify on needs. But he ... he ... he is not just needs.” Liz felt that this focus on deficits distorted professionals’ understanding of her son, saying, “when you’re focused on just deficits you ... you look at it and you think he has nothing that would be of value.” Participants also identified the focus on deficits throughout the assessment process used to qualify for HCBS Waivers. Reflecting on the qualification process, Terry noted “how inadequate the functional assessment tools were that they used.”
Interactions with professionals
Another common frustration related to families’ interactions with professionals during qualification meetings. When describing a qualification meeting for a HCBS Waiver, Liz shared, “sitting there at that table with them interviewing me and asking these questions, and the tone and it’s not a family friendly interview process.” Other participants commented on the intrusiveness of the questions asked during qualification meetings. Susan noted, they “are asking questions that I am not at that point comfortable sharing with people of things that are happening within my own home.” When describing their interactions with professionals, participants often reflected on their past experiences interacting with professionals. For example, Catherine shared, “the last time I opened up to tell somebody how significant things were was when they pretty much told me to put him in an institution. So, now I am sitting in this meeting trying to trust somebody with this information.”
Staff difficulties
Many participants encountered difficulties with staff, such as targeted case managers and direct support providers. One difficulty related to hiring direct support providers. Catherine shared, “I’ve talked to and tried to interview several and it never seems to work out ... So, that’s been difficult to tell you the truth. Difficult finding someone that is quality that is willing to do the job for the pay.” Although Liz has found a consistent direct support provider, that person is not able to cover all of her son’s available hours. To cover the remaining service hours, Liz’s husband acts as their son’s direct support provider. She shared, “his dad has to provide the services, which is not the ideal situation. But, we can’t ... we can’t lose those hours. If we lose them, then we won’t get them back.” Another difficulty related to staff turnover. Susan noted, “one of the biggest challenges within the system is finding qualified targeted case managers, because it’s just a revolving door.”
Suggestions for change
A final focus of the semi-structured interview questions was to gather families’ ideas for improving the process of learning about and qualifying for HCBS Waivers. Participants’ suggestions related to: (a) improving the process of learning about HCBS Waivers, (b) strategies for involving the person with intellectual and developmental disabilities, (c) the need for independent targeted case managers, and (d) the need for improved pay for professionals.
Learning about HCBS waivers
Throughout their responses, participants emphasized the importance of receiving a variety of materials and resources when learning about HCBS Waivers. Additionally, all participants identified the need for personal support throughout the process of learning about HCBS Waivers. Terry mentioned the need for “some kind of navigator” to help families. Danae suggested that relevant professionals be invited to IEP meetings, stating, “I wish that those people who know about the Medicaid waiver would be invited to IEP meetings when ... when the child is in high school.” Susan shared that this personal support should be ongoing, stating, “there should be a person that does a follow-up with every single family.”
Although participants agreed on the need for personal support, their ideas about who should provide personal support differed. Several participants felt that information about HCBS Waivers should be provided by school staff, noting that they had encountered “ill-prepared educational professionals who did not have a concept of adult services.” Susan specifically named transition specialists. Recognizing that not every school district employs transition specialists, Susan identified the need to educate a wide variety of secondary special educators about adult services. Another parent pointed to medical professionals, stating that they should be informing parents of this resource as well.
Finally, several participants recommended making the experience of learning about HCBS Waivers more personalized. Catherine described the process of learning about and qualifying for the HCBS Waiver as perfunctory, stating, “it felt like the staff were going down the check sheet and marking all the boxes.” She felt that the experience should be “more about having a conversation with a family” and learning about their specific needs. Another participant highlighted the importance of timing. Susan cautioned professionals to consider parents’ feelings and emotions, noting that sometimes parents are not “ready to comprehend the information.”
Involving adults with intellectual and developmental disabilities
Throughout their interviews, participants suggested that professionals should make more of an effort to involve adults with intellectual and developmental disabilities in decision-making processes. In making this suggestion, participants noted associated difficulties. Liz relayed, “the hard part is understanding how do you involve an individual who has limited communication in the process? How do you know if this is what he truly wants?” To support this suggestion though, several participants shared ways in which they had involved their son or daughter in the decision-making process.
Independent targeted case managers
Many participants noted the need for independent targeted case managers. Reflecting upon her state’s use of managed care, Susan suggested the need for independent targeted case managers, stating, “you can’t have the fox guarding the henhouse.” Danae made the same suggestion. Recounting a time when her son did not have an independent targeted case manager, Danae noted, “we would talk the talk, but nothing really happened.” Danae indicated that having an independent targeted case manager “has helped quite a bit” and that “things seem to be getting done.” She attributed these improvements to the additional layer of accountability.
Improved pay for professionals
Throughout their interviews, many participants noted difficulties with hiring and keeping direct support providers, attributing these difficulties to poor pay. For instance, Catherine said, “no one wants to work for what it pays.” To address these difficulties, several participants suggested the need to pay direct service providers more. Danae noted, “we need to pay them better. Obviously, they are not getting paid enough if we can’t keep them in the jobs.” Zoe described pay for direct service providers in her state, sharing, “they have no benefits and they make $9.58 an hour ... and we are trusting some very vulnerable people and we are not paying people at the level we need to be.”
Parent characteristics and roles
Although not a focus of the semi-structured interview questions, a prominent theme emerged related to the characteristics and roles of parents. Interview results represented parents as advocates and trainers. Findings also highlighted similarities in parents’ dispositions, as well as their social and cultural capital.
Advocates
Parents’ dialogue throughout the interviews reflected their propensity for advocacy. Parents described their involvement in formal advocacy efforts. Zoe noted that she and her husband “were very active in some umm advocacy” when describing her efforts to secure long-term services and supports for her daughter. Parents also reported engaging in advocacy for specific purposes. Recognizing the need to learn about adult services, Danae described starting a support group for parents when her son was in middle school. Another parent described starting her own non-profit organization, stating, “we initiated it because we wanted to bring more conferences and training and information out here.” Parents also recounted engaging in informal advocacy efforts. After learning about HCBS Waivers, Susan described an effort to attend as many events as possible, stating, “once I found out, I was at everything. I knew some of those things I didn’t need to be at. But I knew I had to be there to learn more because that was the only way I was going to find out information.”
Interview results also provided information about parents’ political engagement. Some parents described engaging in political activity to address issues proactively. Recognizing her state’s waitlist for long-term services and supports, Terry described launching a letter-writing campaign: “I sent a letter every year on her birthday to the state’s waiver agency and to my state senator.” The purpose of Terry’s letters was to remind her elected officials of her daughter’s need for long-term services and supports upon exiting school services. Parents also described engaging in political activity to reactively address issues. For example, upon learning about her state’s long waitlist, Catherine described being compelled to engage in political action, noting: “I ended up talking to our legislators, and I was tracking them down the halls saying, ‘What are you going to do about this?”’
Trainers
Throughout interviews, participants identified the need to provide training to professionals. Participants noted the need to train professionals on their child’s disability. Catherine shared, “we’ve had so many times that we as the parents are training people on what it means to have Autism. Or what it means to have seizures and Autism.” Participants also described a need to train new professionals, noting that oftentimes they were more knowledgeable about the professionals’ roles and responsibilities. Recounting a time when her son was assigned an inexperienced targeted case manager, Susan shared, “I felt bad for her, but you know what, it is not my job to train. And it is not my job to need somebody that has to be trained.”
Dispositions
Participants’ dialogue throughout the interviews revealed similarities in their characteristics or dispositions. Catherine described herself as “a mad crazed mom because that is what you have to be.” Zoe characterized herself as “the mother that most professionals don’t want to talk to” because of her efforts to get her “girl the best that she could have.” Susan depicted herself as “very stubborn,” sharing, “I won’t take no for an answer.” Participants described these characteristics or dispositions as useful throughout the process of learning about, securing, and sustaining long-term services and supports.
Social and cultural capital
Interview results also provided information about parents’ social and cultural capital. When describing the difficult process of securing long-term services and supports, Liz made note of her work experience. Despite having worked at a parent training and information center for two decades, Liz described the process of securing long-term services and supports as difficult even with her “background and knowledge.” In recounting her interactions with professionals, Susan noted, “I think they realize that I am not just a regular parent and they are not going to take away hours.” Danae recognized her status as a privileged parent, stating: “you know, your average parent isn’t going to have these kinds of opportunities that I had.”
Discussion
Understanding the perspectives and experiences of families in supporting their sons and daughters with intellectual and developmental disabilities has been an enduring interest to researchers and practitioners alike. However, little research has focused on understanding the perspectives and experiences of families of adults with intellectual and developmental disabilities when learning about and qualifying for HCBS Waivers. To better understand this topic, we interviewed six mothers of adults with intellectual and developmental disabilities from three different states. Interview results provided a rich understanding of participants’ perspectives and experiences, highlighting their active participation, emphasizing the challenges they have encountered, and uncovering their suggestions for change. In the following sections, we discuss the study’s important findings, noting the study’s limitations and identifying implications for practice and research.
Limitations
In interpreting this study’s findings, several limitations must be considered. First, the study only examined the experiences of mothers, not of other family members. Given this study’s recruitment methods, each mother was associated with a disability organization or advocacy group within one of the five targeted states and volunteered for study participation. This narrow sample limited our ability to capture a complete perspective. Second, only single, stand-alone interviews were conducted. Follow-up interviews would have added a greater depth of understanding regarding parents’ perspectives and experiences. Since parents only participated in one interview, member checks were not conducted to validate researcher interpretations (Creswell & Miller, 2000). Despite these limitations, this study offers unique information that extend the current research base around families of adults with intellectual and developmental disabilities and HCBS Waivers.
Learning about HCBS waivers
A notable finding of this study relates to the methods in which families of adults with intellectual and developmental disabilities learned about HCBS Waivers. None of the participants in this study learned about HCBS Waivers from school staff. In fact, the majority of participants learned about HCBS Waivers from other parents of adults with intellectual and developmental disabilities. Additionally, several participants in this study recalled learning about HCBS Waivers by chance. These findings are not surprising, as previous research has established that parents often report learning about long-term services and supports from other families or simply by chance (Gill & Renwick, 2007). Although there are numerous advantages to learning about long-term services and supports from other families, such as improved socio-emotional well-being and increased social capital (Reynolds et al., 2015), schools, not other parents and families, are responsible for preparing young adults with disabilities and their families for the transition from school to adult services. For many, this preparation should include being educated about HCBS Waivers.
Frustrations and suggestions for change
Another noteworthy finding from this study relates to participants’ suggestions for improving the process of learning about and qualifying for HCBS Waivers. Throughout the study’s interviews, participants made thoughtful suggestions of changes that should be made. These suggestions addressed: (a) improving the process of learning about HCBS Waivers, (b) strategies for involving the person with intellectual and developmental disabilities, (c) the need for independent targeted case managers, and (d) the need for improved pay for professionals. Many of these suggestions were preceded by explanations of the challenges that participants had encountered throughout the process of learning about and qualifying for HCBS Waivers. The challenges described by participants, as well as their resulting frustrations, centered around a lack of clear information, the deficit-driven qualification process, parents’ interactions with professionals, and difficulties with staff.
Some of the frustrations identified by participants in this study have been identified by previous research. Specifically, other research has highlighted the lack of clear information available to parents about long-term services and supports. Similar to this study’s participants, parents of young adults with disabilities involved in a qualitative study conducted by Timmons and colleagues (2004) described adult service delivery systems in the United States as inconsistent and complex. Additionally, past research has exposed difficulties with hiring and paying direct support providers. In a cross-sectional study of the direct support workforce supporting adults with intellectual and developmental disabilities in the United States, Bogenschutz and colleagues (2014) found that low wages, combined with a lack of benefits, is one of the top reasons for recruitment and turnover issues.
Some of the other identified challenges and frustrations were unique to this study. For example, participants in this study identified the deficit-driven qualification process as a concern. Additionally, participants highlighted difficulties they experienced in interacting with professionals, commenting on the intrusiveness of their interview questions and the unfriendly tone of meetings. Although these frustrations have not been identified in other research conducted with parents of adults with intellectual and developmental disabilities, these topics have been identified in research conducted with parents of school-aged children with disabilities. In fact, the topic of family-professional partnerships in schools (e.g., Francis et al., 2016) and a focus on deficits (e.g., Zeitlin & Curcic, 2014) have been studied extensively.
Parent characteristics and roles
Although not a focus of the interview questions, a prominent theme revealed through this study related to roles and characteristics of parents. One of the parent characteristics identified in this study related to social capital (i.e., relationships and social networks among people that afford the interchange of information and cultural goods, economic capital, and additional social capital) and cultural capital (i.e., material items as well as dispositions and knowledge that inform the way a person thinks and acts) (Bourdieu, 1986). Participants’ descriptions of their dispositions, their relationships and social networks, and their knowledge and resources revealed their social and cultural capital, which may have influenced the other parent characteristics that emerged in this study, such as that of advocate and expert. With this social and cultural capital, it is likely that this study’s participants were able to more effectively obtain increased access to long-term services and supports (Bourdieu, 1974), giving them an advantage over other families of adults with intellectual and developmental disabilities.
Many of the participants involved in this study recalled instances throughout the process of learning about and qualifying for HCBS Waivers that necessitated their advocacy. Previous research has affirmed the importance of parents’ advocacy (e.g., Bianco et al., 2009). In fact, there is a long history of parents using acts of advocacy to change service systems (Turnbull & Turnbull, 2001). Another role established by parents was that of trainer. Many of the parents involved in this study highlighted situations when they were called upon to provide training to professionals, such as direct support providers and targeted case managers. Numerous studies have identified a lack of training as a concern in the provision of long-term services and supports (i.e., Hewitt & Lakin, 2001).
Implications for practice
This study’s findings have important implications for professionals responsible for supporting families to learn about and qualify for long-term services and supports. Throughout the interviews, participants noted the importance of professionals providing a variety of materials and resources when learning about HCBS Waivers. Considering this, professionals, such as school teams, disability organizations, community service providers, and advocacy groups, should provide multiple avenues to access learning materials. Second, participants addressed the need for personal supports to navigate the process of learning about and qualifying for HCBS Waivers. Specifically, participants noted the need for follow-up supports. As a result, systems for supporting families through the process should be developed, as one-time meetings are not sufficient. Finally, this study’s findings have implications for personnel preparation programs in disability fields within institutions of higher educations. Understanding families’ perspectives and experiences with long-term supports and services, as well as their suggestions for improvement, will better equip pre-service teachers, vocational rehabilitation counselors, care coordinators, direct support professionals, and others to prepare families for the lifespan.
Implications for research
Although this study provided valuable insights into the perspectives and experiences of families when learning about and qualifying for HCBS Waivers, future research is needed to address this study’s limitations. First, future research should include a more diverse participant group. Previous research reveals that racial and ethnic identities, as well as language differences, influence the supports adults with intellectual and developmental disabilities receive as well as the perspectives and experiences of their families (Blacher & McIntyre, 2006; Pinquart & Sorensen, 2005). For example, culturally and linguistically diverse families of students with intellectual and developmental disabilities report experiencing a lack of communication and negative attitudes from school personnel during the transition planning process (Wilt & Morningstar, 2018). Thus, future research should include a larger, more diverse sample of participants to examine racial, ethnic, cultural, and socioeconomic influences on the perspectives and experiences of families of adult children with intellectual and developmental disabilities. Second, future research should utilize follow-up interviews. In the current study, only single, stand-alone interviews were conducted, preventing the use of member-checks. Follow-up interviews would enhance understanding of families’ perspectives and experiences, thus strengthening the knowledge base.
Outside of addressing this study’s limitations, future research should continue to explore families’ ideas for improving the process of learning about and qualifying for HCBS Waivers. Specifically, researchers should consider topics identified as important by this study’s participants (i.e., family-professional partnerships, the role of social and cultural capital) that have been researched extensively with school-aged children with intellectual and developmental disabilities. Additionally, future research should consider studying methods of providing parent-to-parent supports throughout the process of learning about and qualifying for HCBS Waivers. This set of findings is unique to this study and should be explored further by future research.
Conclusion
This study provided insights into the perspectives and experiences of parents, filling an important gap in the literature by focusing specifically on the process of learning about and qualifying for HCBS Waivers. Findings shed light on parents’ frustrations and revealed their suggestions for change. Such findings should catalyze practitioners, advocates, and researchers alike to create and disseminate learning materials in ways that are supportive of families of adults with intellectual and developmental disabilities.
Conflict of interest
The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.