Exploring the Effect of Autism Waiver Services on Family Outcomes

INTRODUCTION

Supports and services for individuals with disabilities have shifted dramatically over the last 50 years. Historically, those perceived as “different” were removed from the mainstream of society and placed in institutions (Pfeiffer, 1993) or cared for solely by their families (Davis, Fox-Grage, & Gehshan, 2004). Beginning in the mid-1970s, advocates and families began a movement leading away from a system of institutional care to a system providing services in the community (Lakin & Stancliffe, 2007). However, community services left much to be desired because they were typically not individualized, thus leaving the individual to fit the services offered (Lord & Hutchison, 2003; McComb, 2003). Even though people with intellectual and developmental disabilities were living in the community, services continued to be agency directed and based on a medical model of service provision. A medical model uses a framework that all care is physician directed and that often left little opportunity for input from the individuals or family. Frequently, individuals with disabilities and the families who most often supported them accessed services that did not meet the individuals' needs (Caldwell & Heller, 2007; Stancliffe & Lakin, 2005). The medical model or agency-directed services were considered the traditional model of service for adults with disabilities and were generally limited to personal care services and in-home assistance for those living outside institutions.

The movement away from residential care for children with disabilities emerged through improvements in education services for students with disabilities. In the United States, the Individuals with Disabilities Education Act (20 U.S.C. §1400) mandated education for students with disabilities in the least restrictive environment, meaning that students were served in their neighborhood schools. Similar provisions for inclusive instruction have occurred in other developed countries (Inclusion International, 2009). The increasing expectations that children with disabilities will be served in their home communities have occurred in many cases without a concomitant increase in supports to families to enable them to maintain their child successfully in the home. The stressors placed on families supporting a child with a disability are well known (Mitchell & Hauser-Cram, 2008; Plant & Sanders, 2007) and include demands for specialized caregiving, coping with child behavior, and time-consuming coordination and advocacy with health and education providers (Montes & Halterman, 2008).

These stressors are especially evident in families that have a child or children with autism. Although autism is an individual diagnosis, it has a major effect on the family unit (Dunlap, 2007; Kogan et al., 2008). The significant impairment in social functioning and communication associated with autism has pervasive effects on the family that exceed the impact of other disabilities, such as Down syndrome or attention deficit hyperactivity disorder (Brown, MacAdam-Crisp, Wang, & Iarocci, 2006; Lee et al., 2008). Research provides support for the link between autism and increased parental stress, depression, and isolation for families (Abbeduto et al., 2004; Bromley, Hare, Davison, & Emerson, 2004; Duarte et al., 2005; Montes & Halterman, 2007; Schieve, Blumberg, Rice, Visser, & Boyle, 2007). Studies have also linked autism to decreased productivity in areas of family employment (Kogan et al., 2008; Montes & Halterman, 2008). Because of its complex features and extensive need for treatment, autism is a very costly condition to treat and often results in a financial burden for families (Kogan et al., 2008; Montes & Halterman, 2008).

The construct of family quality of life (FQoL) encompasses many of the ways autism affects families, and is therefore a critical outcome in studies of families with autistic children. FQoL is defined as “a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, in which individual and family-level needs interact” (Zuna, Summers, Turnbull, Hu, & Xu, 2011, p. 262). When the quality of a family's life is satisfactory, each individual family member is likely to be emotionally healthier and participate in activities at home and work. The most consistent findings from studies of internal family characteristics relate behavioral problems in children and adults with intellectual and developmental disabilities to lower family well-being (Eisenhower & Blacher, 2006; Esbensen & Benson, 2006; Hastings, Daley, Burns, & Beck, 2006; Herring et al., 2006; Lewis et al., 2006; Turnbull, Summers, Lee, & Kyzar, 2007). Research shows that families face greater difficulties as children with autism reach adolescence. Reasons for this increase include decreased services and ongoing physical behavior problems that are more difficult to manage as the child grows older (Parish, 2006; Seltzer et al., 2004; Smith, Seltzer, Tager-Flusberg, Greenberg, & Carter, 2008).

In summary, while trends of the last few decades have mandated integration into the community for both adults and children with disabilities, key mechanisms needed to facilitate community living have not been sufficient to overcome the many challenges. This is particularly true for those with complex conditions such as autism. Further, families—who play an instrumental role in enabling both children and adults to engage effectively with their communities—have not received the services they need to ease day-to-day living and experience satisfactory quality of life. The absence of support affects both the individual with disabilities and the family unit (Dunst & Trivette, 2009). Currently, caregiving responsibilities can be quite burdensome, involving significant stressors related to demands of the child and the system with which they must interact to facilitate participation of all members of the family unit in home and community activities.

In 2004, the American Academy of Pediatrics issued a policy statement describing a comprehensive care model (i.e., the “medical home”) characterized by care that is “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective” (Strickland et al., 2004, p. 1486). Kogan and colleagues (2008) examined the impact of the medical home on children with autism and children with other special healthcare needs both with and without emotional, developmental, or behavior problems. Findings indicated that children with autism and their families are more likely to have unmet needs in family support services, to receive care that is not family centered, and to have increased financial burdens and the need to reduce or stop work because of the child's condition. The researchers concluded that receipt of comprehensive services such as those provided in a medical home could reduce the burden on families. These findings are consistent with previous research showing that having a child with autism is especially challenging for families (Altiere & von Kluge, 2009; Gray, 2006; Pisula, 2007). Consequently, a reduction in the burden associated with raising a child with autism would likely improve the family's overall quality of life.

In recent years, attempts in the United States to address these problems have focused on policies designed to make funding mechanisms for community supports more flexible and available for individuals and families. In the United States, the primary source of funding for residential and health-related care for individuals with disabilities is Title XIX of the U.S. Social Security Act, commonly known as Medicaid. Federal and state governments jointly fund Medicaid. Individuals who qualify for Medicaid become entitled to certain mandatory medical services such as physician services, hospital services, and family planning and supplies (42 U.S.C. §1396d(a)). All other services such as personal care services, prescription drugs, rehabilitative services and physical, occupational, and speech therapies are considered “optional” services which states may choose to provide. Since 1971, states have offered treatment for individuals with disabilities in institutions known as Intermediate Care Facilities for People with Mental Retardation and Other Related Conditions (abbreviated as ICF/MR). In 1999, the U.S. Supreme Court determined in the landmark case Olmstead v. L.C. that unnecessary institutionalization of individuals with disabilities is a form of discrimination. This ruling impelled states to explore alternatives to institutional care, specifically providing services that enable individuals to remain in the most inclusive setting possible. Funding for these services remains difficult in part because effective community services have to be tailored for each recipient, which requires significantly more planning and coordination than institutional placement.

The focus of this article is on one such alternative to ICF/MR program, the Medicaid Home and Community-Based Services (HCBS) waiver (42 U.S.C. § 1915(b)(c)). Through these waiver programs, states may “waive” traditional Medicaid eligibility requirements; for example, states may waive or alter the income requirement, to allow individuals whose families earn too much to qualify based on individual income. This creates opportunities for children, elderly persons, and other dependent adults. Through HCBS waivers, states may receive federal Medicaid funds to offer needed community supports and services, such as respite care and habilitation services. The high desirability to receive these HCBS waiver services is evidenced by the 330,000 individuals nationwide—including 16,000 children—who are estimated to be on a waiting list for an HCBS waiver (Kaiser Family Foundation, 2008).

HCBS waivers are federal-state partnerships that are complicated to administer but intended to enhance both quality of life and daily living experiences for children and families. A search of social science and health literature revealed research on general characteristics of HCBS waiver programs (e.g., trends, development, cost, accessibility; Kitchener, Ng, & Harrington, 2004; Laudicina & Burwell, 1988; LeBlanc, Tonner, & Harrington, 2000) and research on specific waiver programs. However, these studies are limited to waivers for specific groups such as elderly persons (e.g., Felix, Dockter, Sanderson, Holladay, & Stewart, 2006; Sands et al., 2008) and persons with HIV/AIDS (e.g., Anderson & Mitchell, 2004; Cowart, Mitchell, & Meyer, 1994). We found two published articles specific to Medicaid waivers and autism. Shattuck, Grosse, Parish, and Bier (2009) analyzed patterns of utilization and disparity in Wisconsin's Medicaid program for children with autism and found that racial and socioeconomic disparities in Wisconsin autism program utilization have decreased over time. Reinke (2009) described Medicaid support for individuals with autism, including information about autism waivers. No empirical studies related to the evaluation of HCBS waivers for children with autism were found. In sum, evaluations of the outcomes of HCBS waivers in general did not focus on family or individual quality of life or parental employment; and specifically, no studies at all are available about outcomes of autism waivers.

According to the Centers for Disease Control and Prevention, an estimated 9.2 per 1,000 children in the state of Maryland have an autism spectrum disorder, slightly above the national estimate of 9.0 per 1,000 (Rice, 2009). In 2000, the Centers for Medicaid and Medicare Services (CMS) approved Maryland's application for an HCBS waiver for children with autism spectrum disorder (further referred to as MD-AW). According to CMS, nine states including Maryland offer an HCBS waiver program specifically for individuals with autism; of these, seven are for children. Other states such as Wisconsin provide autism services as part of a broader HCBS waiver programs. The MD-AW has grown from 250 funded slots in 2001 to 900 in 2010 and is administered by the Maryland State Department of Education (MSDE). In fiscal year (FY) 2008, total state and federal Medicaid spending for Maryland autism waiver participants equaled US$36.4 million, or US$40,421 per participant (Hilltop Institute, 2009). This spending level shows a substantial financial commitment to services to support care for children with autism. The MD-AW is the largest of the state HCBS waivers specifically for individuals with autism, accounting for 86% of total federal HCBS autism waiver spending in FY 2008 (Eiken & Burwell, 2009). The overall goals of the MD-AW are: (1) keeping children with autism safe in their home and community; (2) improving the quality of life for families of children with autism; (3) providing quality services to maximize a child's capacity for independence; (4) providing quality services to support and develop functional and adaptive skills; and (5) providing quality services to reduce maladaptive behaviors in children with autism spectrum disorder (Application for a §1915(c) Home and Community-Based Services Waiver, 2009).

Children below the age of 21 who are diagnosed with autism spectrum disorder as defined in the Diagnostic and Statistical Manual of Mental Disorders (4th edition) and meet the eligibility requirements for ICF/MR level of care may be eligible for the MD-AW. The official diagnosis is included as part of the determination for ICF/MR level of care, which is reviewed annually by a multidisciplinary team including a licensed psychologist or certified school psychologist. In order to be eligible for ICF/MR level of care, the multidisciplinary team must find that individuals display substantial need in two of three domains: (1) basic activities of daily living; (2) functional activities of daily living; or (3) maladaptive behaviors (see Code of Maryland Regulations §10.09.56.02 for full eligibility requirements).

At the time of the current study, the services provided through the MD-AW included: environmental access/modification; intensive individual support services; therapeutic integration; residential habilitation; family training; respite care; and supported employment (see Code of Maryland Regulations §10.09.56.11, 14–19 for a description of services). Waiver recipients also receive service coordination through their local school system. Because the 900 MD-AW slots are full, the state created an autism waiver registry (i.e., waiting list) for families who are interested in applying to receive services. Waiver eligibility is not determined until a space on the waiver becomes available. MSDE reported in January 2009 that 895 children were on the waiver and as of May 2010, over 3,000 children were on the registry waiting to apply for waiver services.

SPECIFIC AIMS

The current study is a direct response to the absence of empirical research regarding outcomes associated with significant funding for HCBS waiver programs. Information about how effective these programs are for families is increasingly important as one considers the expense, the long registry list, and the increasing number of states that are adopting waiver programs.

This study was designed to learn more about the effect of services provided by the Maryland HCBS autism waiver on outcomes including FQoL and employment. We investigated the following research questions:

METHOD

RESULTS

For all statistical analyses, an alpha level of 0.05 was used to indicate statistical significance. A Wilks' lambda multivariate analysis of variance showed waiver status to be a significant predictor of FQoL while controlling for income and age of child, F(6,758) = 11.28, p < 0.05. This remained true for overall FQoL and all five subscales. With respect to Research Question 1, waiver recipients reported significantly higher satisfaction with overall FQoL (Table 2).

For Question 2, after controlling for age of child, results show that respondents on the waiver reported significantly more part-time employment than those on the registry, F(1, 851) = 7.192, p < 0.05. No other significant differences in employment status were found (see Table 3). There was no significant difference between waiver and registry respondents in terms of the perceived effect of their child's autism on their employment status. Half of the respondents in both groups reported that the needs of their child with autism affected their employment status “a lot.”

With respect to Question 3, 38% of waiver recipients reported that their employment status improved after receiving waiver services. Further analyses show that respondents who reported “better” employment status also reported significantly higher satisfaction with the emotional well-being subscale on the FQoL (M = 3.56) than those who reported that their employment status remained the same or got worse (M = 3.32; t = −1.97, p = 0.05). Individuals who reported better employment status also reported higher satisfaction with the disability-related support subscale of the FQoL (M = 4.02) than those who reported that their employment status remained the same or got worse (M = 3.79; t = −2.35, p = 0.02).

DISCUSSION

The MASS study provided an opportunity to gather data from families receiving waiver services and those on the registry. Overall, both groups reported lower satisfaction with FQoL than findings from similar studies that included families of young children with less severe disabilities (Summers et al., 2007; Wang et al., 2006). In addition, the majority of respondents in both groups reported that having a child with autism affected their employment. These data support previous findings, which suggest that having a child with autism places a considerable burden on families (Altiere & von Kluge, 2009; Gray, 2006; Pisula, 2007). Waiver families reported a significantly higher mean age than registry families, yet still reported higher FQoL. Research indicates that families of children with autism face increasing challenges as the child enters adolescence (Parish, 2006; Seltzer et al., 2004; Smith et al., 2008). Therefore, waiver families could be expected to report lower overall FQoL because of the higher mean age of the child. This was not the case in the current study, suggesting that waiver services may be mediating some of the difficulties faced by families, particularly during adolescence.

The mean satisfaction ratings for FQoL and all subdomains in our study were lower than those found in previous studies using the same measure. In particular, families on the autism registry report lower FQoL, particularly with regard to emotional well-being (EWB). The low scores on the EWB domain are of particular interest as these results correspond with the growing body of research on the effects of autism on carers' mental health. Waiver recipients' satisfaction for the EWB domain was higher than the registry group, suggesting that waiver services may have a positive effect on overall family EWB. However, in both groups these scores are lower than scores on the other four domains. This finding is consistent with previous research, although, the low EWB ratings suggest that autism may have a stronger effect on FQoL than other disabilities. EWB may be a key area for targeted services in future program development or modification, as well as for further research.

In terms of employment, findings also show increased part-time employment for respondents enrolled in the waiver program. While noteworthy, it is difficult to say whether this is a desirable outcome without further information about the household. Perhaps waiver services offer carers extra time to pursue part-time employment. In addition, families who reported better employment status after receiving waiver services also report greater satisfaction with disability services and EWB. Perhaps these two areas are indicative of areas in which the waiver is particularly effective.

One limitation of this study is the lack of generalizability. This is largely because of the nonrandom sample and the low return rates of responses to the survey; respondents were limited to one family member of families enrolled in the waiver or on the registry. Having this status shows that these families have some capability to advocate for their child's needs and seek resources. There is no publicly accessible comparable general data about families of children with autism in Maryland, therefore it is difficult to determine whether the families in this study are representative of the overall waiver and registry populations. We also do not know whether the initial entrants into the Medicaid waiver program were drawn from families who may have been more alert to the program's opening and thus are not representative of families on the registry. In addition, data were limited to families in which carers have enough time to complete a 12-page survey and thus a self-selection bias may have been present. Therefore, these data may be missing some of the families most in need simply because they were too overwhelmed to participate in the survey or their lower education level may have felt inhibited from responding. A more representative sample would include a comparison group of children with autism who are not on the waiver or registry.

Further, in order to maintain a reasonable number of questions, this survey did not explore in-depth household demographics. Variables such as the number of people in the household presumably would affect outcomes, especially if the family has more than one family member with a disability. Particularly with respect to questions about employment outcomes, more demographic information and more in-depth probing of the nature of the employment issue (e.g., employment status of the respondent's spouse, cross-referencing with marital status to determine impact of employment for single parents) are needed to explain the initial finding that respondents report of their child with autism has an impact on employment. Additionally, the survey did not take into account the current downturn in the economic climate in Maryland which may have affected full-time employment opportunities. Finally, the survey did not address the level of disability in each child, particularly those on the registry. We know more about waiver participants' level of disability because they must meet ICF-MR level-of-care in order to qualify; however, eligibility for those on the registry is not determined until a waiver slot becomes available and they apply for services. Future research should explore these variables to improve internal validity.

Our findings suggest that families of children with autism who currently receive services through the Maryland autism waiver report higher FQoL than those not receiving services through the waiver. Although the registry families may also receive services, as mentioned previously, Medicaid spending for each participant averages about $40,000 per year; therefore, it is not likely that a high number of registry families could pay for equal services out-of-pocket.

Maryland is one of a small number of states that offer a waiver program specific to individuals with autism and has one of the largest enrollments of all such waivers (Eiken & Burwell, 2009), however there are currently over 3,000 families on the registry. Despite efforts to expand programs such as HCBS waivers, thousands of children and families are in need of services. Additional research is needed to fully understand the most effective features of the waiver, including whether and how waiver programs make a difference in families' quality of life, health, and participation in school, work and leisure activities, and the effect of self-determination on these outcomes. The MASS study was intended to be an initial data collection project used for general further research questions. The next phase of the study is designed to capture data via qualitative interviews with families who expressed interest in further participation. This will facilitate in-depth exploration of outcomes at the individual family level. This research is essential for the development and implementation of best practices when treating children with autism and their families. Perhaps most important is the potential to broadly influence services and policy. Research-based evidence is useful in advocating for expanded provision of services and comprehensive policies. Areas for future consideration include availability of coordinated services, such as those characteristic of the waiver program, through third-party payment, as well as additional resources to expand waiver services to more families nationwide.