The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well-established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer to access resources. Our study examined the resource needs of 1,738 parents of children and adults with IDD in the state of Tennessee. Most parents reported limited familiarity with programs across every domain (e.g., residential, vocational, postsecondary). The extent to which parents indicated various types of information would be helpful varied by demographic factors (e.g., daughter or son's age, disability diagnosis, socioeconomic status), as did the avenues through which they indicated they were most likely to access information and resources. We offer recommendations aimed at equipping parents with relevant supports and resources to guide their son or daughter's journey across the lifespan.
Supporting families with members who have intellectual and developmental disabilities (IDD) has been a longstanding focus of research, policy, and practice (e.g., Agosta & Melda, 1995; Reynolds et al., 2015; Turnbull, Shogren, & Turnbull, 2011; Williamson & Perkins, 2014). Amidst the inconsistency of service systems, families remain the clear constant for children and adults with IDD. From birth through adulthood, the involvement and advocacy of parents often comprise the most enduring sources of support. Indeed, nearly three quarters of adults with IDD fall outside of the formal disability service system, and most receive their primary support within the family home (Braddock et al., 2015; Larson et al., 2015). The extent to which parents and caregivers are equipped with the information, resources, and linkages needed to support their sons and daughters will certainly impact the likelihood of the nearly five million Americans with IDD thriving in their schools, workplaces, and communities.
Although the immense importance of supporting parents is firmly established (American Association on Intellectual and Developmental Disabilities/The Arc, 2014; Blacher, Knight, Kraemer, & Feinfield, 2016; Reynolds et al., 2015), many parents report considerable difficulty accessing guidance and assistance across different stages of their daughters' and sons' lives. Whether around the point of diagnosis, throughout formal schooling, during the transition period, or amidst adulthood, the literature is replete with studies suggesting many parents desire better information and resources (e.g., Francis, Gross, Turnbull, & Parent-Johnson, 2013; Kraemer & Blacher, 2001; Trainor, 2010). Moreover, several pathways have been established to provide resources to these parents, including parent-school collaborations (e.g., Francis, Blue-Banning, Haines, Turnbull, & Gross, 2016), Parent to Parent programs (e.g., Santelli, Turnbull, Marquis, & Lerner, 1993), Partners in Policymaking (e.g., Zirpoli, Hancox, Wieck, & Skarnulis, 1989), community conversations (e.g., Carter, Swedeen, Cooney, Walter, & Moss, 2012), parent support networks (e.g., Mueller, Millian, & Lopez, 2009), and other local educational initiatives and family support programs. Knowing what parents need in terms of information, resources, and training could help ensure the most relevant content makes its way into their hands at key points in time.
To better equip parents of children with IDD with essential information and guidance, research is needed in three areas. First, a constellation of formal services and supports already exist to support people with IDD and their families in different stages and aspects of their lives (e.g., vocational, residential, recreational, social, financial). Although their availability and quality can vary, knowing how to access such supports is essential to people with disabilities and families. Yet, the extent to which parents are familiar with existing resources and programs in their community is unclear. The degree to which parents are aware of available resources directly impacts the likelihood they will pursue and ultimately access those supports (Reynolds et al., 2015; Wandry & Pleet, 2012).
Second, as the primary advocates for their sons and daughters, it is important that parents remain well-informed about many critical areas related to independent living, education, employment, and community experiences. However, little is known about the types of information parents consider to be most helpful. Kraemer and Blacher (2001) interviewed 52 parents of transition-age students with IDD about the kinds of information they desired across nine areas. More than half wanted more information about adult services, professional supports, financial supports, work options, parent support groups, and living options. However, the degree to which this desire is widespread and enduring 15 years later warrants additional investigation. Further research also is required to understand how the needs and interests of parents differ depending on the age of their son or daughter.
Third, considerable research has focused on the most promising avenues for equipping professionals with relevant resources and training (e.g., Brock, Huber, Carter, Juarez, & Warren, 2014; Penuel, Fishman, Yamaguchi, & Gallagher, 2007). Yet, connecting parents to needed information in a timely and convenient manner becomes more complicated. Professional books, journal articles, conferences, university programs, and workshops may not represent preferred pathways for most parents. As local entities and state agencies strive to connect families with relevant information and training, their investment would be enhanced by knowing which offerings parents say they would be most likely to access. Although calls to equip parents have been longstanding (Machalicek, Lang, & Raulston, 2015; Winston & Turnbull, 1982), contemporary research is needed to strengthen and sustain this call in meaningful ways.
The present study explores the information and resource needs of parents with daughters or sons with IDD. We examined the following questions:
How familiar are parents with local and state supports, services, and programs available to support their child?
What resources and training topics do parents consider to be particularly helpful?
How likely are parents to access different avenues for learning about these topics?
To what extent are parents likely to seek assistance through various personal and professional networks?
Additionally, we were interested in the extent to which responses might be impacted by several different factors, including the communities in which they lived, economic resources, racial/ethnic background, highest level of education, the age of their child, and the nature of their child's disability.
Participants were 1,738 parents or caregivers of people with IDD (referred to as “parents” in the remainder of this article). To be included in the study, participants must have (a) had a daughter or son with a primary or secondary label of intellectual disability (ID), autism, or multiple disabilities; and (b) lived in the state of Tennessee. The majority of participants (82.6%) identified as the mother of the focus child, 8.2% as the father, 3.9% as a grandparent, 1.0% as another relative, and 1.5% as a legal guardian not related to the child. Most parents (94.1%) reported their son or daughter lived with them in the same home. Nearly one-fifth were non-White (19.5%) and 39.4% had children who had been eligible for free and reduced-price meals at school. The majority (64.9%) was married or living as married, and less than half (40.7%) had earned a bachelor's degree or higher (i.e., 20.3% bachelor's degree, 14.3% master's degree, and 6.1% professional or doctoral degree). When asked to describe the locale of their community, 15.0% described it as urban, 41.0% as suburban, and 38.4% as rural.
Most parents (n = 1,065; 61.2%) had sons or daughters who were ages 0–21 at the time of the survey; 38.8% of parents (n = 673) had family members ages 22–78. The daughters and sons of these parents averaged 20.2 years old (SD = 12.8); 40.0% were female. Almost half (46.1%) were reported to have a primary or secondary label of autism without an accompanying intellectual disability; 45.3% had a primary or secondary label of intellectual disability or developmental delay without autism, and 8.4% had labels of both autism and intellectual disability. When asked how they would describe their child's level of disability, 20.8% indicated mild, 51.4% indicated moderate, 24.4% indicated severe, and 3.3% indicated profound. Parents indicated their daughter or son exhibited one or more of eight challenging behaviors in the last 6 months: unusual or repetitive behavior (48.0%), uncooperative behavior (45.6%), withdrawal or inattentive behavior (40.4%), disruptive behavior (33.0%), socially offensive behavior (20.7%), destructive to property (19.9%), hurtful to others (18.6%), and hurtful to self (17.5%). We asked parents how often their daughter or son had significant health problems requiring surgery or hospitalization (M = 1.7; SD = 0.8), had substantial problems getting around (e.g., walking, running; M = 1.9; SD = 1.3), and were involved in activities in the community (M = 2.8; SD = 1.1). Responses were provided on a 5-point, Likert-type scale (1 = never, 2 = rarely, 3 = sometimes, 4 = often, 5 = almost always).
Recruitment and data collection took place over 9 months. We sought to achieve broad representation from a sample reflecting the racial/ethnic, economic, and geographic diversity of families across the state. We partnered with school districts, state agencies, and disability-related organizations to extend survey invitations to families meeting our inclusion criteria.
Reaching family networks
We developed a multi-tiered approach that involved contacting an array of disability- and family-focused organizations, networks, and listservs to identify those who had relationships with parents of children with IDD. We created an extensive list of recruitment announcement options (e.g., fliers, listserv blurbs, personalized e-mail invitations), allowing partnering organizations to adapt each according to their best method for reaching families. Because the survey could be completed online (i.e., REDCap platform; Harris et al., 2009) or in print, announcements included a link to the survey and gave the option to request a print survey. We also attended community events (e.g., state disability conference, Special Olympics, district transition fairs) with invitations and print surveys.
A total of 131 organizations, groups, and networks contributed to recruitment efforts, including: area Special Olympics programs (n = 22), disability services providers (n = 16), individual autism support/advocacy groups (n = 15), other sports and recreation programs and camps (n = 14), state Arc chapters (n = 10), family support programs (n = 10), parent support groups (n = 10), Down syndrome support/advocacy groups (n = 7), faith-based ministries (n = 7), school-based extracurricular programs (n = 6), University Centers of Excellence in Developmental Disabilities projects (n = 4), employment services providers (n = 3), social services provider (n = 3), statewide advocacy organizations (n = 2), and other organizations (n = 2). Most organizations (82%, n = 108) recruited participants by sending e-mail invitations or announcements. In addition to general mailings, several organizations (e.g., The Arc Tennessee, Tennessee Department of Intellectual and Developmental Disabilities, Autism Society of Tennessee) sent print surveys to all families meeting our specific eligibility criteria. Surveys sent by mail included a cover letter invitation and postage-paid, reply envelope. These organizations attached mailing labels on our behalf to preserve the privacy of mailing lists.
Recruitment through school districts
To reach parents of school-age children, we partnered with 53 school districts across the state that agreed to send home either study fliers or print surveys with postage-paid, reply envelopes. The latter option was intended for districts in which many families were not expected to have Internet access to complete the survey online. To reach parents in Spanish-speaking communities, we worked with statewide and regional multicultural support groups for families of children with disabilities to translate and distribute the survey.
Incentives for participants
We took several steps to secure a large, representative pool of participants. First, surveys were completed anonymously. Second, we randomly selected 50 participants to receive a $25 gift card to one of four stores (contact information was requested on a separate survey not linked to their responses). Third, we offered both print and online versions of the survey to capture a wide span of participants, including those without Internet access. Fourth, we designed the survey to be completed in less than 30 min.
We developed a survey to (a) understand parent expectations, priorities, and concerns related to employment and community involvement for their sons or daughters with disabilities (Blustein, Carter, & McMillan, 2016); and (b) learn the resources and training pathways they would find most helpful in supporting their son or daughter. This survey was available in two formats designed for parents of children and youth with IDD (i.e., ages 0–21) and parents of adults with IDD (i.e., ages 22 and older). Any distinctions made between the formats will be referred to as child or adult. We asked 12 parents of children with IDD to review an initial draft of the survey to provide feedback on the clarity, accessibility, length, and thoroughness of the survey. The final child survey—accessible in both English and Spanish print and online versions—included five sections (as well as two demographic sections) and 42 total questions. The adult survey was identical to the child survey, except for the omission of the section pertaining to school-based supports and slightly different language when asking parents to think about their son or daughter's future (i.e., rather than “life after high school”). This article focuses on four sections found in both formats pertaining to identifying resource needs and desires, including: (a) parents' familiarity with existing resources, (b) perceived helpfulness of different resource topics, (c) likelihood of parents choosing to access different types of resources, and (d) likelihood of parents accessing different members of their networks.
Familiarity with resources
First, we asked parents to indicate how familiar they were with work, school, residential, and community activity options for their son or daughter (1 = not at all familiar, 2 = a little familiar, 3 = somewhat familiar, 4 = very familiar). We also asked parents to rate their familiarity with local or state programs available to help their son or daughter in each of nine areas (see Table 1). These areas reflect domains addressed in educational and adult planning (e.g., Carter, Brock, & Trainor, 2014; Schalock, Bonham, & Verdugo, 2008). Ratings were provided using a 4-point, Likert-type scale (1 = not at all familiar, 2 = a little familiar, 3 = somewhat familiar, 4 = very familiar). Cronbach's alpha for this section was .94.
Resource and training topics
We were also interested in learning about the topics of trainings or resources parents would find most helpful (Table 2). Parents rated 14 topics using a 4-point, Likert-type scale (1 = not at all helpful, 2 = a little helpful, 3 = somewhat helpful, 4 = very helpful). These items were drawn from a review of Projects of National Significance from the Administration on Intellectual and Developmental Disabilities systems change efforts and research on parent perspectives (e.g., Bianco, Garrison-Wade, Tobin, & Lehmann, 2009; Chambers, Hughes, & Carter, 2004; Kraemer & Blacher, 2001). We provided space to list any other topics of interest. Cronbach's alpha for this section was .95.
In addition to understanding the topics of interest, we also wanted to know how parents were most likely to access the information and trainings on these topics if they were available (Table 3). Parents rated 12 methods of accessing resources using a 4-point, Likert-type scale (1 = not at all likely, 2 = a little likely, 3 = somewhat likely, 4 = very likely). These items were drawn from studies addressing professional development pathways (e.g., Brock et al., 2014; Yoon, Duncan, Lee, Scarloss, & Shapley, 2007). We provided a space to list other ways parents wanted to receive information. Cronbach's alpha for this section was .91.
Utilizing different networks
We asked parents how likely they were to seek help finding a job for their son or daughter from different networks, including: (a) a family member or relative, (b) a friend, (c) someone from [their] faith community, (d) someone from the local school system, (e) someone from a disability employment provider, and (f) someone from a local disability organization. Ratings were provided using a 4-point, Likert-type scale (1 = not at all likely, 2 = a little likely, 3 = somewhat likely, 4 = very likely). Cronbach's alpha was .85.
We used descriptive statistics (i.e., frequencies, means, standard deviations) to summarize parental ratings on their familiarity with existing resources, the helpfulness of potential resource topics, likelihood of accessing different resource types, and the likelihood of seeking assistance from members of personal networks. We used independent samples t-tests to examine the extent to which these parent responses differed based on the demographic factors of locale, ethnicity, socioeconomic status, parents' highest level of education, disability diagnosis, and ages of daughters and sons. Specifically, we coded the following categorical variables: (1) rural represented whether parents indicated they lived in a rural versus nonrural community (i.e., urban or suburban); (2) white indicates whether parents identified as White versus those who marked any other ethnicity (i.e., African-American/Black, Hispanic, American-Indian/Alaskan Native, and Asian American); (3) economic status indicates whether parents reported their daughter or son had received free or reduced-priced meals versus those who did not; (4) autism represents parents whose daughter or son had autism versus those whose child had an intellectual disability without autism; (5) adult represents parents in the adult sample versus those who were parents in the child sample; and (6) bachelor's represents parents who indicated their highest degree earned was bachelor's degree, master's degree, professional or doctoral degree versus parents who responded their highest education level was associate's degree, some college, or high school. These variables were coded as: rural (1 = rural, 0 = nonrural); white (1 = White, 0 = non-White); FRPM (1 = eligible for free or reduced-price meals at school; 0 = not eligible for free or reduced-price meal at school); bachelor's (1 = bachelor's degree or higher; 0 = associate's degree or lower); autism (1 = had primary or secondary disability diagnosis of autism; 0 = did not have autism); and adult (1 = parent in the adult sample; 0 = parent in the child sample). We first conducted the t-tests using the whole sample, but we also ran them separately to see if any results could be attributed to differences between the samples. We did not report any major differences and, thus, combined the full sample for subsequent analyses. We examined the magnitude of differences by calculating Cohen's d, which is the difference in group means divided by the pooled standard deviation. We interpreted effect sizes using the guidelines outlined by Cohen (1988), in which .20 is considered small, .50 moderate, and .80 large.
How Familiar Are Parents With Available Supports, Services, and Programs?
When asked about their overall familiarity with work, school, residential, and community activity options for their son or daughter, parents' responses were uniformly low—with 30.3% indicating they were not at all familiar with options and 28.6% reporting they were a little familiar. Table 1 displays the parent ratings of their familiarity with local or state supports, services, and programs related to specific topic areas. Overall means were low and below the midpoint of the scale, ranging from 1.61 (postsecondary education options/supports) to 1.92 (family supports/programs). With the exception of family supports/programs, more than half of parents indicated they were not at all familiar with programs in these nine areas.
Table 1 also includes comparisons of familiarity based on six selected demographic factors. When comparing demographic factors, we found all nine available resources and programs (e.g., family supports/programs, social relationships/friendships) to be statistically significant for disability type and sample demographics. Specifically, parents of daughters and sons with IDD who did not have autism were more familiar with local or state resources than parents whose children had autism. Likewise, parents whose sons and daughters were adults (over age 22) were more familiar with local or state resources than parents of children and youth. Parents who had at least a bachelor's degree were more familiar with all nine areas than those without a bachelor's degree. Effect sizes tended to be small to medium.
What Resources and Training Topics do Parents Consider to be Most Helpful?
Parent ratings of the helpfulness of each topic area are displayed in Table 2. Overall means for anticipated helpfulness were medium to high, ranging from 3.38 (understanding the adult service system) to 2.62 (helping my son or daughter prepare for college). The topics rated as being somewhat to very helpful for the largest percentage of parents were understanding the adult service system (82.1%), supporting strong transition planning (80.7%), accessing Medicaid waiver programs for services and supports (79.8%), and connecting my son or daughter to a job in the community (79.2%). When parents wrote in other topics of interest, the need for information on health insurance, community recreation programs, independent living, transportation and mobility, and respite care were identified.
The extent to which perceptions of helpfulness varied based on demographic factors is also displayed in Table 2. For example, parents whose daughters and sons had autism rated 12 of 14 topics as more helpful than parents of people without autism, parents of adults rated 13 of 14 topics as less helpful than parents of children, parents whose daughters or sons had not received free or reduced-price meals identified eight of 14 topics as more helpful than parents of individuals who were eligible, and parents who were non-White rated six of eight topics as more helpful than parents who were White. Parents with at least a bachelor's degree considered six of 14 topics more helpful than parents without bachelor's degrees.
How Likely Are Parents to Access Different Avenues for Learning?
Parent ratings of the likelihood with which they would access each resource type are provided in Table 3. Overall ratings were medium to high, ranging from 3.37 (a parent handbook) to 2.47 (attending local parent workshops on weekdays). The avenues in which the highest percentage of parents indicated they would be somewhat or likely to access were parent handbook (83.5%), printed fact sheets and resource guides (80.0%), and downloadable fact sheets and resource guides (78.8%). We noted differences in relation to race/ethnicity, disability type, and age (see Table 3). Parents whose daughters and sons had autism indicated they were more likely to access eight of 12 avenues than parents of individuals without autism. Parents who were non-White indicated they were more likely to access 10 of 12 avenues than White parents. Parents of adults were less likely to access all 12 avenues relative to parents of children. Parents with at least a bachelor's degree were more likely to access two avenues for information: a website on employment and downloadable fact sheets and resource guides.
How Likely Are Parents to Seek Assistance From Members of Different Networks?
The percentage of parents indicating they would be somewhat or very likely to seek help from different networks for helping their son or daughter find a job was 78.8% for someone from a local disability organization (M = 3.2; SD = 0.9), 75.9% for someone from a disability employment provider (M = 3.2; SD = 1.0); 65.5% for a friend (M = 2.9; SD = 1.1); 62.0% for someone from the school system (M = 2.8; SD = 1.1); 61.4% for someone from the faith community (M = 2.8; SD = 1.1); and 60.6% for a family member or relative (M = 2.7; SD = 1.2).
Efforts to equip parents effectively to support the needs of their sons and daughters with IDD can be strengthened by understanding their familiarity with existing resources, the types of topics they identify as especially helpful, and the avenues through which they would likely access information and training. This large-scale, statewide survey provides several key insights to guide the development of resources for families with members with IDD.
First, we found the majority of parents reported very low familiarity with programmatic resources across all domains (e.g., social relationships/friends, postsecondary education options/supports). For example, half of parents reported no familiarity with programs in eight of nine areas we asked about. Although such low ratings of familiarity could be due to a paucity of resources in their community, the pattern of these findings statewide across our sample also suggests that available services and resources may not be reaching the intended audience of families. Although ratings tended to be somewhat higher for parents of adults without autism, they were consistently low. Additionally, the familiarity of parents of children and adults with autism was significantly lower than parents of those without autism across the majority of items. We found this surprising, given the growth of autism-specific advocacy groups and organizations for families. (In Tennessee alone, more than 50 agencies and organizations exist to support families with autism.) Although our findings could be attributed to timing or relevance (e.g., these programs may not represent a need for a parent at this particular point in time), the dominant theme of unfamiliarity echoes previous literature indicating parents have limited knowledge of the resources available to support their son or daughter during critical milestones (e.g., Francis et al., 2013; Kraemer & Blacher, 2001). For example, Martinez, Conroy, and Cerreto (2012) indicated that many parents do not fully understand the transition process and possess a low degree of knowledge and access to information related to postsecondary education.
Second, this limited familiarity of resources was accompanied by a clear desire for more targeted information designed to meet parents' specific needs. For example, more than half of parents affirmed the potential helpfulness of targeted information on nine of 14 topics we asked about (e.g., understanding the adult service system, connecting my son or daughter to a job in the community). The desire for information was higher for parents of children receiving free or reduced-price meals and parents of children from non-White backgrounds across a number of areas. These perspectives extend those of previous studies and bolster calls for more concentrated outreach and support for culturally and economically diverse families (Kim & Morningstar, 2005; Landmark, Zhang, & Montoya, 2007; Trainor, Lindstrom, Simon-Burroughs, Martin, & Sorrells, 2008). Moreover, our findings reinforce the need for outreach beyond “one-size-fits-all” mass dissemination to reach a diverse pool of families. That is, what is considered convenient, interesting, or desirable for one family may not be so for another family. Understanding this distinction is essential for educators and service providers to know how to best tailor their dissemination to the individual families with whom they work.
Third, we found considerable variability in the avenues through which parents indicated they would be likely to access resources and information. Their ratings reveal why providing workshops and conferences should not be the primary or sole avenues available for accessing resources and information. For example, one parent commented in the open response section: “the faster I can click on it [information and resources] … the better.” Moreover, the desire for technology-based resources varied across education level and community type. Parents with a bachelor's degree or higher were more likely to access some web-based resources, such as a website on employment and downloadable fact sheets, than parents with lower levels of education. Although technological avenues were considered helpful by some parents (e.g., apps on smartphones or tablets or interactive websites), parents also endorsed more traditional ways of receiving information, such as handbooks and printed fact sheets and resource guides. This was especially true for parents from rural communities, who reported being less likely to access information online. These findings highlight the value of offering multiple pathways through which information is shared. This would allow parents to choose based on their preferences and needs. Additional research is needed to further investigate the professional development avenues families from diverse communities need and desire.
Fourth, when asked about the various networks to which they would turn for help connecting their daughter or son to employment, parents indicated they would be more likely to consult with the experts in the field, such as local disability organizations, disability employment providers, and school systems. However, more than half of parents also said they would be somewhat or very likely to turn to friends, family members, or members of the faith community for support in this area. Although the formal service system designed for people with disabilities should play a critical role in helping families to thrive, more informal and natural supports need not be neglected (e.g., Nord, Timmons, Carter, & Gaventa, 2014; Trainor, 2008). As emphasized by Reynolds et al. (2015), meeting the multifaceted needs of people with IDD and their families requires consideration of the full breadth of community assets and social capital that may be available.
Fifth, it is important to address the consistent differences in ratings of parents of children and youth relative to those of parents of adults. The responses of parents in the adult sample were significantly different from those in the child sample on every response item except for one (i.e., accessing Medicaid waiver programs for long-term services and supports). This emphasizes the urgency for stakeholders to consider the different needs and interests when supporting parents to, through, and beyond the post-school transition for their son or daughter. Given the wide age-range of our sample, it is clear a constellation of partners and entities from early childhood to school-based to adult services are needed to deliver this information to families in advance rather than “just in time.” Creating opportunities for longitudinal, positive outcomes will require collaborative efforts of key stakeholders (e.g., educational teams, organizations, advocacy groups) to assist parents early in the transition process by supplying targeted information and materials and providing ongoing support even after the transition period ends. In other words, a single entity cannot be responsible for delivering information and resources to support families through and beyond the transition process; rather, it takes a multitude of individuals in partnership and collaboration.
Implications for Practice and Policy
Our findings have important implications for teams tasked with providing quality services for families including members with IDD. First, parent responses varied widely across familiarity with resources, the need for targeted information, and the avenues in which parents would most likely access information. Service providers and school teams should consider how to best tailor resources, workshops, and other materials to meet the individualized needs of parents across a variety of community settings.
Second, parents may benefit from a variety of resources to which they do not currently have access. Perhaps this gap stems from the way educational teams and others are disseminating this information to parents. Service providers, school teams, disability organizations (including university centers on developmental disabilities), and advocacy groups should consider carefully the delivery of these materials and resources to parents that will meet their unique needs by providing multiple avenues to access information and resources. The key is to determine what families need, which information is pertinent, and when it should be delivered. This study illustrates one data-driven way to plan systemic and coordinated efforts to better equip families.
Third, our findings also have implications for personnel preparation programs in disability fields within institutions of higher education. Understanding parents' unique perspectives, concerns, and priorities regarding employment and community involvement for their son or daughter, as well as the resources parents find most helpful, will better equip preservice teachers, vocational rehabilitation counselors, care coordinators, direct support professionals, and others to prepare families throughout the lifespan.
Limitations and Future Research
Several limitations of this study highlight avenues for future research. First, although our sample size was large and reflected the diversity of Tennessee, the needs and experiences of parents may differ in other parts of the country. For example, the services, resources, and dissemination efforts of agencies and organizations can vary widely from one state to the next, influencing the degree to which parents know about and access programs and supports. Local and state groups charged with addressing the needs of families should replicate this study to determine the extent to which the findings apply within their geographic area.
Second, the resources, topics, and information dissemination pathways we explored in our survey were not exhaustive and should not limit consideration of other areas. In other words, parents may have additional needs extending beyond the areas we queried, particularly at different points in their family's life cycle. Likewise, we asked parents to provide ratings of each survey item without asking them to rank-order their priorities. For example, a parent might consider learning about both waiver programs and preparing for college to be important. Future studies should adopt a mixed method approach combining large-scale surveys with more in-depth qualitative examination of the needs of families.
Third, although we identified a number of intriguing differences (and similarities) in parents' perspectives based on factors such as geographic locale, race/ethnicity, economic status, disability type, and age, we cannot speak definitively about why such differences exist. Moreover, we examined each factor individually, although various combinations could serve to highlight different portraits of family need. For example, the needs of parents of young children with autism in rural communities could differ from those of parents of adults with severe intellectual disability in urban areas. Future studies should enable more rigorous examination of how multiple factors might converge to shape the needs and preferences of parents.
Connecting families to the most relevant resources through the avenues they find most accessible and convenient is an essential key for ensuring long-term success for children and adults with IDD. Our study assessed the resource and informational needs of 1,738 parents or caregivers of sons or daughters with IDD. We found familiarity with existing resources to be uniformly low across multiple domains. Such findings should serve as a catalyst for practitioners, advocates, and researchers alike to understand, create, and disseminate the resources that will be most beneficial and salient in assisting parents and families of people with IDD through all stages of life. A strategic combination of targeted information provided by stakeholders and organizations will help parents to feel as though they are a vital member of a supportive team invested in the long-term success of their sons and daughters.
Support for this work came through a Projects of National Significance grant from the Administration on Intellectual and Developmental Disabilities, Administration for Community Living, U.S. Department of Health and Human Services (90DN0294). Partial support also came through a grant from the Vanderbilt Institute for Clinical and Translational Research grant support (UL1 TR000445) from NCATS/NIH. We are grateful for the contributions of Scott Blain, Jennifer Bumble, Amy Gonzalez, Steven Greiner, Carrie Guiden, Sarah Harvey, Lynnette Henderson, Elizabeth Hill, Robert Hodapp, Rachael Jenkins, Kevin Raley, Cecilia Melo-Romie, Janet Shouse, and the more than 40 organizations and agencies comprising the TennesseeWorks Partnership.