Autism Spectrum Disorder (ASD) is a neurodevelopmental, chronic illness characterized by abnormal or impaired development in social interaction and communication, and a restricted repertoire of activity and interests (American Psychiatric Association, 2000). The Centers for Disease Control and Prevention (2014) has estimated that 1 in 68 United States (U.S.) children have been diagnosed with ASD by the age of three; school-aged boys comprise 1 in 42 of the children diagnosed with ASD. ASD is the fastest growing developmental disability (Autism Speaks, 2011; Centers of Disease Control and Prevention, 2014). Children and adolescents living with ASD may need care from both primary healthcare providers and medical specialists, as well as behavioral health, social, educational, and vocational services.
Furthermore, children living with ASD are more frequently diagnosed with other developmental, psychiatric, neurologic, or medical co-occurring chronic illnesses than are children without an ASD diagnosis (Levy et al., 2010). Analyzing Medicaid insurance claims of ASD children in eight states in the US through ICD-9-CM codes for ASD, Peacock, Amendah, Ouyang, and Grosse (2012) reported that 53% of the ASD children were commonly diagnosed with attention deficit/hyperactivity disorder, seizures, or intellectual disabilities and that the financial cost of managing these illnesses in ASD children was six times greater than for children with non-ASD diagnosis. Peacock et al. (2012) also noted significant differences in the cost of outpatient services, medication, and inpatient services between children with ASD and children with non-ASD diagnoses.
Due to the needs and complexities of children and adolescents living with ASD, care coordination by a primary care provider within a medical home model is strongly encouraged. Previous researchers have documented the benefits of access to a medical home for children and adolescents, especially if a special health need is present (Strickland et al., 2004). Healthy People 2020 (U.S. Department of Health and Human Services, 2012) (MICH-30 and MICH-31) established a goal to increase access to medical homes for children with special healthcare needs (CSHCN) to ensure that every child’s preventative and special healthcare needs are met without any gaps in care. A medical home, or patient-centered healthcare home, provides coordination of care with a primary healthcare provider who is able to offer a seamless transfer of pediatric-specific primary care into adulthood. Yet children and adolescents with ASD more often lack a medical home compared to children with other special needs, especially during their transition into adult, primary healthcare (Golnik, Ireland, & Borowsky, 2009).
Resources for transitioning older adolescents and young adults living with ASD into any adult social or health services decrease dramatically after age 22 (Gerhardt, 2009). During this transitional period, gaps in healthcare services are likely to occur when an adult primary medical home is unavailable. Transitional medical homes are needed. Unfortunately, nursing does not have a significant presence in transitional medical homes. Reasons for the lack of nursing presence during this transition include the lack of knowledge about both ASD and the concept of transition from adolescent to adult healthcare services (Osterkamp, Costanzo, Ehrhardt, & Gromley, 2013). We recommend the following approaches to promote effective transition from adolescent to adult services for people living with ASD: (a) development of an advanced practice nursing role to facilitate healthcare transitions, (b) education of all adult primary healthcare providers regarding ASD, and (c) legislative advocacy to educate elected officials about healthcare issues of people living with ASD and the need to support the continuation of the Combating Autism Reauthorization Act of 2011 so as to strategically plan the needs of people living with ASD. Each of these recommendations will be discussed below.
Betz (2013) identified the lack of involvement of nurses in the development and implementation of transition services and also the need for interdisciplinary team approaches to address this issue of a nursing absence, noting that major transition models are currently using a medical framework. Advanced practice nurses are in an ideal position, based on their educational preparation, to provide the care coordination services needed to effectively transition adolescents living with ASD into adult healthcare settings. Advanced practice nurses are in prime roles to provide leadership within interdisciplinary teams, both to develop a patient-centered model for adolescents and young adults who are diagnosed with ASD, and also to implement and evaluate the effectiveness of the various models.
Additionally, adult healthcare providers require more education regarding the needs of people living with ASD in order to facilitate the transition of ASD adolescents from a pediatric setting to that of an adult setting. Currently, there are a limited number of publications addressing the educational needs of clinicians who receive adolescents with ASD into their practices. Will, Barnfather, and Lesley (2013) have reported that advanced practice nurses lack self- perceived competence in providing care to children living with ASD. Osterkamp et al. (2013) have noted the growing number of adolescents with chronic conditions, such as ASD, who will need to transition into adult primary care, and who will require primary care providers, including advanced practice nurses and physicians, who understand the physiological, psychological, developmental, and behavioral needs of adolescents living with ASD.
Legislative advocacy is also needed to facilitate the transitions of adolescents with ASD into adult medical homes. In 2006, the federal government implemented the Combating Autism Act of 2006 (Public Law 109-416). At that time, the Interagency Autism Coordinating Committee (IACC) was established and directed to create a strategic plan addressing current issues in autism. This plan is updated frequently. One of the topics in this strategic plan addresses resources and services that will be needed for adults living with ASD in the future. Many departments, under the guise of the U.S. Health and Human Services, are involved in the IACC; they are identifying disparities in services and the need to evaluate outcomes with valid instruments.
In 2011, the government passed the Combating Autism Reauthorization Act of 2011 (Public Law 112-32). This act, in place until September 30, 2014, must be renewed in order to continue the work of the IACC and other governmental agencies involved in the strategic planning of ASD resources. It is important that nurses advocate for individuals living with ASD by encouraging Congress to renew this act.
In 2001, Congressman Mike Doyle (D-PA) and Representative Chris Smith (R-NJ) created The Coalition for Autism Research and Education (CARE) to raise awareness in Congress about ASD and also to engage the members of Congress in discussion and support of initiatives to address the needs of those living with ASD. Nurses can encourage their congressional representative to become a member of the Autism Caucus by reviewing the membership list (Doyle, 2014) of the Autism Caucus on Mike Doyle’s website and contacting their own legislators to encourage their participation in this caucus.
Wenter (2014) has emphasized that nurses are patient care experts who understand the needs of patients, families, and caregivers. Nurses are in leadership positions in healthcare facilities, nursing education, and administration. Their expertise and unique viewpoint is crucial in moving healthcare policy forward and influencing legislators regarding resource allocation to provide for the greater good. Nursing is well positioned to be instrumental in advocating for policy changes that create and maintain safe, person-centered, quality care for patients, families, and caregivers.
We recognize, however, that changing healthcare policy can be a daunting task. Although nurses are highly trusted by the general public, we as a profession are not strong advocates for either patients or ourselves. This needs to change. Nurses can make a difference by organizing and working to change healthcare policy. Wenter (2014) has suggested ways in which nurses can be involved in healthcare policy to transform delivery systems of care that support nursing and recipients of healthcare. Early on, nurses need to discern which legislators in their state General Assembly have a background in nursing or healthcare. This background information is helpful to understand the knowledge level of legislators who are making decisions on behalf of nursing and consumers. If a legislator does not have a healthcare background, nurses will want to modify their language when communicating with these legislators so as to ensure mutual understanding of healthcare issues. For example, concise, clear messages could be developed to highlight the healthcare issue and recommend changes, incorporating and summarizing key data points in so doing. These summary statements can be used when communicating with legislators through various approaches, such as in-person meetings, telephone calls, email communication, or letter writing campaigns.
Nurses also need to feel confident in speaking with legislators about the needs of the profession and their patients that directly impact their ability to provide safe care. Many state nursing associations have policy committees and events to assist nurses to effectively reach and communicate with elected officials. Wenter (2014) has recommended that nurses contact their state nursing associations for more information; she also has encouraged use of a website developed by Ohio Nurses Association (ONA) as an example of a grassroots effort (ONA, 2014).
Legislators listen to their constituents, particularly the experts in the field. Legislators need to know that transition processes in care for older adolescents and young adults living with ASD are scarce and the risk for healthcare disparities in this population is high. Additionally, legislators need to realize that resources must be allocated to adult primary care providers in order to support efforts in creating safe transition into adult healthcare homes. Nurses who are passionate to make a difference in the lives of their patients must be persistent in their efforts to strengthen healthcare policy. In summary, we encourage nurses to communicate healthcare needs to their legislators and to become members of organizations that advocate for health policy changes, remembering there is strength in numbers.
Acknowledgement: The authors acknowledge Ms. Tiffany Wenter, BSN, RN for her suggestions related to effectively working with legislators to advance healthcare issues.
Kathleen Rogers, MSN, RN, CNE
Mary Beth Zeni, ScD, RN
© 2014 OJIN: The Online Journal of Issues in Nursing
Article published November 12, 2014