Ziviani, Jenny PhD, MEd, BA, BAppScOT; Darlington, Yvonne PhD, PGDipAdvSWPractice, BA, BSocWk; Feeney, Rachel BSpPath; Rodger, Sylvia PhD, MEdSt, BOccThy; Watter, Pauline MPhty, BPty
CHILDREN with physical disabilities such as cerebral palsy and spina bifida often encounter social, physical, and institutional barriers which compromise their ability to participate in various life roles and engage in activities including play and education (Law et al., 1999). Furthermore, many physical disabilities are permanent and can significantly impact the individual, his or her family, and the community through increased demands on public health and education systems (Newacheck & Halfon, 1998). International estimates of the prevalence of physical disability vary widely, and it is likely that these variations result from differences in the definitions used (Rosenberg, Zhang, & Robinson, 2008). In an Australian survey, 3.7% of children younger than 14 years had a physical disability as their primary disability type (Wen & Fortune, 1999).
Proponents of early intervention (EI) for children with physical disabilities argue that benefits span the elements of the International Classification of Function (World Health Organization, 2001) and include impairment reduction and increased activity and participation opportunities. Furthermore, there is evidence that investing resources early in a child's life can pay dividends not just for the child and family but also to their local community and society at large by increasing children's ability to participate in their community, undertake tasks of everyday living, and minimize the need for ongoing expensive support services (Diamond & Kontos, 2004), potentially attenuating medical, health, educational, and social costs.
Each child with physical disabilities presents with unique developmental challenges as well as individual strengths that are mediated by the child's family and social milieu. EI staff need to be cognizant of the circumstances of children and families; indeed, family-centered practice (FCP) that views the child in the context of his/her family rather than just focusing on the biomedical aspects of his or her condition is a salient and highly promising approach to EI for children with disabilities (Stewart, Law, Russell, & Hanna, 2004).
FCP in early childhood programs incorporates an emphasis not only on the content delivered (family supports and services) but also the process of service delivery (developing successful family-professional partnerships) (King, Rosenbaum, & King, 1996). Consistent with FCP principles, the transdisciplinary/primary provider model of EI for children with disabilities involves service delivery principally by one professional working across disciplines, with supplementary services provided by other disciplines as needed (often through joint sessions/visits) (King et al., 2009). This service delivery model facilitates holistic assessment and intervention, thus enhancing the effectiveness of the EI response and increasing providers' ability to meet the range of children and families' complex needs (Woodruff & Shelton, 2006). Therefore, effective program evaluation necessitates the inclusion of measures of satisfaction with both quality of service received and also the relationship with service providers.
Gaining feedback from EI staff is required to allow for evaluation of programs from the perspectives of multiple stakeholders. This approach to outcome measurement enhances the reliability of data collected using subjective measures. Staff members perceive EI services to be of a high standard; however, they also report numerous avenues for improvement. Interestingly, staff reports of service quality and barriers/facilitators to optimal service provision tend to be similar to those reported by parents (King, Law, King, & Rosenbaum, 1998). Early interventionists often comment favorably on the ability of staff to work effectively within their teams (Mazer, Feldman, Majnemer, Gosselin, & Kehayia, 2006), also including the development of positive relationships and partnerships with families (King et al., 1998; Minke & Scott, 1995). With respect to the barriers to ideal EI delivery, service system issues, such as therapist shortages, high workloads, and insufficient funding and resources are problems that adversely impact on programs (Mazer et al., 2006; McWilliam, Young, & Harville, 1996). Staff members have also highlighted challenges posed by working with increasingly complex and diverse families accessing EI (Tomasello, Manning, & Dulmus, 2010; Wesley, Buysse, & Tyndall, 1997).
With increasing knowledge about the importance of the early years for children's development, there has been a growing emphasis on research of EI programs for children with disabilities. Yet, there have been relatively few studies of the features and quality of these programs from the perspective of service providers, particularly of programs for children with physical disabilities. This study relates specifically to understanding program staff members' perceptions of unmet needs in the communities they serve, changing demographic patterns, and barriers or facilitators for service delivery. A qualitative design using semistructured interviews was appropriate given the exploratory nature of this research (Patton, 2002). Furthermore, semistructured interviews undertaken with key informants are an effective way of gaining an understanding of the intricacies of people's experiences (O'Day & Killeen, 2002).
CONTEXT OF THE CURRENT STUDY
The provision and funding of disability services in Australia is complex, with various responsibilities sitting with each state and territory government as well as the Commonwealth Government (Australian Institute of Health and Welfare, 2011). Australia has strong universal early childhood service systems, and EI for children with disabilities is primarily delivered until the time of the child's school entry (at 5 years of age in most states). However, EI may continue for the first few years of formal schooling in addition to children accessing therapeutic support at school. Following transition from EI services, support is usually provided principally through the education system as it pertains to academic goals. Additional services are sought from private providers or health systems as deemed necessary.
In Queensland (the focus of this study), disability services are coordinated by Disability Services (Department of Communities), with government delivering some support services directly as well as funding nongovernment organizations (NGOs) to provide other services. In recognition of the gaps and limitations of existing services, the Queensland government, through Disability Services, established the Enhancing Service Delivery—Sector Capacity Early Intervention Initiative, funding three NGOs, the Cerebral Palsy League (CPL), MontroseAccess, and Sunshine Coast Children's Therapy Centre (SCCTC), to deliver EI services to children with physical disabilities aged birth to 9 years and their families. This initiative was designed to determine how the provision of support delivered through these NGOs could benefit service recipients and enhance the activities of providers.
Detailed program logic of the three EI programs has been reported elsewhere (Ziviani, Darlington, Feeney, & Head, 2011a) and highlighted that the programs differ somewhat in terms of their client base, service delivery models, and characteristics of the delivering organizations (although they are all funded under the same initiative). The service delivery approaches adopted by the organizations in this study incorporate elements from inter- and transdisciplinary (primary provider) models, and there was variability both across and within organizations in terms of the extent to which providers adopted various models. For example, in some offices, CPL and MontroseAccess teams tended to focus more on family support and provide only therapy support on an “as-needed” basis, whereas all families accessing services through SCCTC received regular therapy appointments (unidisciplinary or joint sessions) unless on the waiting list. The EI programs operate within a family-centered framework and are able to provide various services that are responsive to children and families' changing needs. CPL provided EI across both early childhood services and family and school support services, delivered by teams with expertise around the needs of babies/young children and school-aged children, respectively. The three service providers differed considerably with respect to service location. For example, SCCTC offered a largely center-based service, with staff making two or three visits annually to other environments relevant to the child, for example, school, home, and childcare. CPL tended to provide services across a range of settings, and MontroseAccess had the greatest focus on providing services in the community.
This study is embedded in a longitudinal research project charged with evaluating three EI services for children with physical disabilities in Queensland, Australia. Ethical clearance was obtained from the ethics committees of The University of Queensland (project number 2008000349) and CPL (2008/2009 1015) in line with National Health and Medical Research guidelines. The larger study involved a systematic literature review, development of program logic for each of the NGOs, interrogation of quantitative data collected by the researchers, and a cost-benefit analysis.
The aspect of the study being reported here relates specifically to understanding program staff members' perceptions of service delivery and needs in the communities they serve. Qualitative research methods employing content analysis were used. Content analysis involves examination of a series of texts to identify recurrent themes that reflect the collective voices of research participants (Anderson, 2007). In this process, the researcher's personal impressions of the texts should be limited and themes should be named using the participants' words (Anderson, 2007).
Participants and recruitment
As part of the larger study, researchers sent information and consent packages to all parents/carers of children younger than 9 years identified by the three participating NGOs on two occasions. EI staff members from these services were invited to participate in the study, with 42 staff members being recruited. Researchers recruited participants from the larger sample of 42 program staff members who had participated in the earlier quantitative component of the study and volunteered at recruitment for the later interview component. A small number of participants later declined an interview because they had or were soon going to cease work in one of the EI programs; however, refusal was primarily due to participants being “too busy.” All 10 consenting staff went on to complete the interviews. Researchers provided participants with the interview questions before seeking consent to ensure that they were aware of the interview protocol and to improve the quality of feedback provided.
Each participant was involved in delivering EI services to children with physical disabilities (and their families) aged between birth and 9 years. All of the participants were female, three were speech pathologists, two each were physiotherapists and social workers, and the final three staff members comprised an EI officer, family support worker, and occupational therapist. Staff had been working in their profession between 2 and 33 years (mean, 17 years) and for their current organization between 2 and 21 years (mean, 6.6 years).
Three members of the research team (RF, PW and SR) undertook the interviews using a semistructured open-ended interview guide designed by the investigators. No other individuals aside from the participant and researchers were present at the interviews. The questions were based on available literature and also drawing on responses from formal evaluation measures in the larger study and feedback provided in interviews previously conducted with parents from the three EI programs. The interview guide (provided in Appendix A) comprised 13 questions concerned with staffs' experiences of delivering EI services, the types of services and information provided, FCP, relationships with families and team members, flexibility of service provision, and positive/negative experiences working in EI (including barriers to optimal service delivery, changing and unmet family needs, and recommendations for improvement). Within each topic area, researchers used probing questions to elicit further information. The interviewers asked participants to provide any additional comments following the set questions.
Because participants resided across a large geographical area (the state of Queensland, Australia), we undertook interviews with participants either over the telephone (50%) or face-to-face (50%). Where staff resided within 80 km of The University of Queensland, they had a choice of a work visit or telephone interview. Interviews took an average of 50 to 60 minutes to complete. There were no differences in the interview protocol/questions or the duration of telephone versus face-to-face interviews; therefore, responses were not analyzed separately.
Interviews were audio-taped with participant consent and the content (excluding observations) transcribed verbatim. In addition to audio recordings, interviewers noted participant responses to all questions during the interviews. These interview notes were read by two independent research team members and revised until there was consensus among the researchers that the notes were an accurate representation of the transcripts. Following this, the researchers compiled and sent summaries of the interview notes to service providers for feedback as part of member checking (Patton, 2002). Based on the comments received from participants, minor changes to content and wording were required for three of the 10 summaries.
Content analysis (Patton, 2002) of the interview summaries followed an inductive approach. In the preparation phase, the unit of analysis was individual themes, and four researchers (SR, PW, YD, and RF) read through the interview summaries several times to become immersed in the data. In the analysis phase, open coding involved an initial attempt at making notes and identifying categories in the margin of the interview summaries. Three researchers (SR, PW, and RF) met to discuss and confer regarding categorization of this content. From the content categories, four researchers (SR, PW, YD, and RF) discussed emergent themes and subthemes and developed a coding structure on the basis of consensus among all researchers. Researchers used NVivo qualitative data analysis software for assistance in data management and coding. Finalizing the coding involved an iterative process whereby new themes were added, other themes and subthemes were collapsed into broader higher order themes, and the consistency of coding was reviewed. This process was ongoing until all researchers agreed that the three final themes fully reflected the interview content. In line with the inductive approach taken to analysis, drawing conclusions from the coded data was the final task prior to reporting the analysis process and results.
The research officer assigned participants a code number, which they used to label all participant interview data. All files were kept secure in a locked filing cabinet at The University of Queensland and were accessed only by research team members. Researchers reported findings using de-identified data and in communicating the findings, they did not publish any information that would potentially reveal the identity of individuals. No other ethical issues were encountered in data collection or reporting.
The two major thematic areas that emerged related to positive aspects of service quality and issues in service provision. Appendix B lists the two broad themes and the eight subthemes identified within these different themes, as well as each subtheme's frequency (i.e., general, typical, or variant) among the participants.
Theme 1: Service quality
Generally, participants believed that their NGO was providing high-quality EI services, despite difficulties they experienced in terms of high workloads and insufficient staffing and funding. Three subthemes emerged regarding positive aspects of service quality in response to both general and targeted interview questions including “What do you think works well with the EI services provided?” and “Are there any factors which assist your organization to provide a high-quality service to families?” These were (1) FCP, (2) aspects of service structure/delivery, and (3) staff-related qualities and skills.
Participants were specifically asked how they defined FCP and also to comment on whether or not they believed that their EI program was delivered in accordance with these principles. Staff showed a sound understanding of the principles of FCP (King, Rosenbaum, & King, 1995), and there was considerable overlap in their explanations of this approach. Most commonly, when defining FCP, participants discussed recognizing parents' knowledge of their child, forming equal partnerships with parents/families, and being guided by the needs and goals of families in service planning and delivery. One of the speech pathologists commented that “we ensure families are part of the team and acknowledge that they know their child best. We also aim to meet all the family's needs” (Participant 1).
Participants typically provided favorable feedback when commenting on the extent to which they felt EI services provided were family-centered. For example, one said, “services are offered on an individual basis—programs are adapted for the particular family with respect to the goals, amount of modeling provided, level and complexity of information given and the amount of follow-up required” (Participant 9). Interviewees highlighted the fact that their EI team made a concerted effort to provide EI in accordance with FCP. Two staff felt that services were delivered in a more family-centered manner in the current service than they had previously been at their NGO and highlighted differences between this newer approach and “traditional therapy” stating that “the service has changed over the seven 7 years I have been working here—it is not just about the child, it's more family centred now” (Participant 4).
Positive aspects of FCP included the ability to provide individualized, tailored services; a focus on children's inclusion in mainstream settings; delivery of services in natural environments (two participants each); a focus on family education and empowerment; supporting families with manual handling, back care, and other health issues; and assistive technology services (one participant each).
Conversely, some staff discussed the need to maintain a balance between having respect for families and acknowledging that they are experts about their child while also recognizing therapists' specialist proficiency. Two therapists discussed problems they had encountered where in some cases there was tension between what families had requested and what they perceived as appropriate and realistic goals that were consistent with the child's abilities, available resources, and evidence-based approaches.
Participants discussed numerous ways in which FCP was evaluated, including the use of annual surveys (details of survey content not provided); family completion of the Measure of Processes of Care (MPOC) (King et al., 1995) questionnaire (three participants each); informal monitoring of family engagement with the program (two participants); completion of parent satisfaction surveys; monitoring of parent skill development; and through the development of the family service plan (FSP; one participant each). Two participants whose teams had used the MPOC to measure FCP commented that “feedback from families was variable across different service areas” (Participant 3) and “families reported that they wanted more information” (Participant 7).
The provision of therapy and equipment services and family support is guided by the FSP, which participants typically viewed as being an important aspect of family-centered service provision. Nine of the staff discussed the development and use of these plans when responding to interview questions regarding FCP. All children and families should have an FSP that outlines the goals of the family and how these goals will be achieved. Service providers support families in the processes of identifying the outcomes that are the most desirable for them and the means by which they can best be attained. The family service plans are revised every 6 to 12 months or as needed in light of the child's progress and changing family needs and priorities. The importance of the FSP in providing family-centered EI was articulated by one participant in the following way, “individual plans are helpful resources and are a tool which encourages family centred service provision” (Participant 9).
Participants consistently identified families as being the decision makers regarding goals in the FSP, conversely feedback regarding the level of involvement of staff in goal setting differed across participants. Six participants commented that they provided only advice/input on the FSP if requested by families, whereas two other participants described a process in which families and staff tended to formulate goals jointly. The following comment reflects typical processes adopted by staff in developing the FSP:
Occasionally we flag issues with parents, but generally speaking what services are delivered is based on what families have asked for. Any prompting we give is just to do with families not necessarily having the awareness to know what services they can access or know what problems might arise if things aren't addressed (Participant 8).
Two participants commented that they applied Goal Attainment Scaling (Kiresuk, Lund, & Larsen, 1982) to a selection of each family's goals as a more formal measure of change.
Service structure and delivery
Aspects of service structure and delivery that were considered to contribute to overall service quality were flexible service delivery, the provision of a wide range of services, and the focus on intervening early.
Flexibility of service provision
Nine participants discussed issues of flexibility in terms of the timing and frequency of therapy and other services and the location of appointments offered to families. All nine highlighted the importance of flexibility in service delivery given the complex needs of children and families. Staff generally report that EI was offered in a flexible manner, although two stressed that this occurred within constraints such as timetabling difficulties and large caseloads.
Comments regarding the flexibility of service provision related to the location of EI services. Although four participants reported that the venue for appointments was negotiated depending on the family's preferences and routines, another two felt that their program had limited flexibility to deliver services across a range of settings. The divergence in feedback reflected differences in the service delivery models adopted by the three NGOs, which included both community and center-based models. The two programs that were largely community-based tended to deliver services both within the child's home and a range of other natural environments. Conversely, the program that was primarily center-based allocated only a fairly fixed number of visits to other settings, which some participants perceived to be problematic.
Two participants commented on the flexibility of appointment times. As one physiotherapist said, “we try to be very flexible with appointments, even though timetabling is hard to manage” (Participant 6). Similarly, participants made positive remarks regarding the flexibility of service intensity, noting that when families needed it, staff were able to provide quite frequent contact. One of these staff further noted that “there tends to be greater frequency of appointments early on...often the frequency does decrease as we put services and supports into place” (Participant 9). Another participant cited a further example of flexible service provision, stating that “parents can have a choice of therapists, which is good because therapists have different styles” (Participant 1).
Wide range of services provided
When asked about the positive aspects of their EI programs, service providers felt that their programs offered various services (not just therapy but also equipment services and family support) and were able to meet a range of child and family needs identified on the FSP either within the program or by referring families to another agency. Nine participants linked service quality with the wide range services and supports offered by the EI programs. For example, one participant felt that their EI program was “closest to offering the full range of services required by families” (Participant 3). Staff discussed numerous features of the EI programs that they considered to be of value, including family support, yoga, music and recreation programs (three participants each), equipment services, assisting childcare and education staff, playgroups and support from EI officers, and early childhood teachers (two participants each). Conversely, when asked to think of anything that families need help with that is not currently being provided by their EI programs or other organizations, participants identified numerous areas of under- and unmet need (as will be discussed further in the following section on issues in service provision).
Focus on intervening early
Three of the 10 participants highlighted the EI focus as a key aspect of service quality. These staff felt that their programs made it possible to intervene early in a child's life, preventing complications that might arise from delaying this support. All three staff saw this focus as being conducive to offering a good quality service for children and their families. As a family support worker explained, “One thing that works well is being able to support families very early on in their journey in knowing that their child may have a disability” (Participant 10). A speech pathologist commented that “often we start seeing them younger than six months” (Participant 1). Benefits of being able to provide EI cited by participants included being able to “build a relationship over time” (Participant 1) as well as having the opportunity to “develop children and families' attitudes and capabilities early, rather than wait until later on” (Participant 4).
Staff-related aspects of service quality
Participants noted a number of program staff characteristics that contributed to service quality relating to the qualities and skills of staff, effective teamwork, and coordination with other organizations.
The high quality of staff was discussed by seven participants. Adjectives such as “motivated,” “dedicated,” and “committed” were frequently used. A family support worker commented that, “we have excellent, dedicated staff that focus on positive outcomes for children and families” (Participant 3). Two participants reported that staff spent a lot of time doing additional work for the benefit of clients and three participants also praised the skill level of staff.
Teamwork and service coordination
Nine participants identified teamwork and coordination as contributing to service quality. First, they commented on the capacity of EI staff to support each other and work as a team to meet all the identified needs of children and families, stressing the value of both general collegial and specific clinical support from their team members. As one speech pathologist stated, “there is good professional support amongst the therapists as everyone has their area of expertise. Also with the family services, everyone is working together towards achieving families' goals” (Participant 1). Staff identified various methods of team-based service provision, including trans-, inter-, and multidisciplinary approaches, and discussed the benefits and limitations of each. In particular, participants felt that transdisciplinary and interdisciplinary approaches were useful in compensating for staff vacancies (provided staff members were experienced in these approaches).
Beyond the level of the EI teams, participants felt that the services provided were well coordinated across the range of organizations and agencies with which families were involved. One EI officer discussed a major strength of the program as “being able to offer a coordinated and focused service...very often families will talk about having difficulties with being able to coordinate different services and demands on their time e.g. specialist/therapy/additional appointments” (Participant 3). A physiotherapist commented that “families are happier when professionals liaise with each other and are in agreement” (Participant 6). Staff mentioned working with a range of other professionals and agencies, including hospital staff, general practitioners, medical specialists, private therapists, education and childcare workers, and staff from Disability Services. In addition to coordination regarding a particular child or family, EI staff also liaised with other agencies more broadly, for example “to give information and raise awareness of the service”. One family support worker outlined ways in which she felt service coordination should improve, in particular that staff “should be supporting families to think more inclusively and about the more ordinary services they can be involved with” (Participant 10).
Theme 2: Challenges in service provision
Despite their strong endorsement of the quality of services they and their agencies provided, participants also identified a few challenges: (1) meeting the high demand for services, (2) under and unmet needs, and (3) inadequate funding and staffing. These difficulties were clearly interrelated: children and families with complex needs require more staff time and expertise for these needs to be met; spending more time with some clients means less time to spend with others; and both issues require increased resources to be resolved. Thus, although the challenges are discussed separately as a means to foreground specific issues, each can only really be understood in the context of the others.
Meeting the high demand for services
Participants typically discussed the strain on EI programs and staff members arising from the sheer number of children and families accessing services. As one speech pathologist commented, “there is pressure to see a certain number of children—each day/week, in the overall caseload. There is no time to stop and plan...there is pressure to provide everything needed right now” (Participant 2). Some staff commented that this problem was worsening over time, with an increasing volume of referrals being received. A social worker remarked that “the job is becoming more stressful” (Participant 7).
Although having stringent entry criteria was seen as exclusionary, it was also felt that “strict eligibility criteria are needed because of the high number or referrals received compared to the team's capacity” (Participant 3). Participants typically reported that waiting lists were growing–-one speech pathologist stated simply, “the waiting list has increased as families don't leave the service at the rate that they are referred” (Participant 2). Six EI staff identified this as being problematic largely because children and families were ineligible to access therapeutic support while on the waiting list. Two participants discussed the length of time that families spent waiting, with one physiotherapist reporting that “at the moment we also have a waiting list of 9–12 months” (Participant 6).
Participants identified numerous ways in which their EI services responded to the issue of waiting lists, although they also noted that these strategies had shown varying levels of success. Strategies for wait list management identified by participants included running group programs for children and families on the waiting list, encouraging families to access private therapy services through Medicare, reducing the upper age limit for eligibility, and discharging children and families who no longer require the service or required very minimal services (having met their goals or being better served by another organization/EI program). These strategies were not commonly adopted, however, with each being mentioned by one participant only.
In addition to the number of clients accessing the EI programs, staff typically also commented on the complex characteristics of many of these children and families. Some participants felt that this complexity had increased during their time with the organization whereas others felt that this change was occurring more gradually. Staff discussed the various ways in which children were “complex,” such as being medically unwell (three participants), being referred when very young (immediately postdiagnosis), and having significant levels of disability (one participant each). Furthermore, many families were also seen as being in challenging circumstances, for example, having transport difficulties (five participants), being from culturally and linguistically diverse backgrounds, being engaged with Child Safety Services, and having parents with poor cognitive and coping skills (one participant each). Staff identified further ways in which dealing with families had become more difficult; for example, one participant felt that families were increasingly outspoken and quick to highlight negative aspects of service provision and another commented that more parents worked full-time, reducing their flexibility when scheduling appointments and their ability to attend education sessions and groups.
Participants discussed how the increasing complexity of children and families has implications for the types of services and supports they require; for example, “there is much liaison now required around equipment prescription, equipment trials, sourcing funding, writing applications, and liaison with all other stake holders, both medical and educational” (Participant 2). Other consequences of the greater complexity of children/families included the need to undertake more home visits and to provide more counseling support, access to equipment, and respite services. As a result of all of the above service needs, one speech pathologist felt that staff now “have less time to spend doing hands-on therapy” (Participant 1). Related to this issue, one occupational therapist commented, “families often have more goals than we can address, especially in terms of therapy...it is mostly fairly consultative in our service” (Participant 8). Another participant (a family support worker) felt that “families still need increased access to therapists as we have insufficient therapy hours and staff for families to get a really good service” (Participant 10).
Six participants highlighted the need for enhanced information provision. One social worker felt that this aspect of service provision was currently inadequate as a result of the high demand for EI, stating “families reported that they felt we should provide better information...ideally we would put out a newsletter but no one has had time to do this” (Participant 7). Staff identified the need for greater and improved parent education sessions (three participants), family newsletters, information on the services and supports offered by the EI program, research findings, education on FCP, and information on the broader disability sector/other available resources (one participant each). Furthermore, participants highlighted the need for information to be tailored to the individual needs of each child and family, as well as consideration of the timing, form, and volume of information provided.
Inadequate funding and staffing
Funding shortages were discussed by all participants, thus indicating a general frequency. Two staff discussed the need for fundraising to compensate for shortfalls in funding gained from government sources and highlighted the time-consuming nature of such activities. Furthermore, one speech pathologist reported that “what we have to fundraise keeps increasing and it has to hit a brick wall at some stage” (Participant 2). Another speech pathologist reported that fundraising monies were particularly difficult to raise at present “the global financial crisis reduces the money raised through fundraising” (Participant 1).
Although participants felt that the current funding levels were insufficient to support the high level of demand for services, they still greatly valued the government funding that was provided. Two staff commented on the advantages of having the autonomy to spend funds and provide services as they saw fit, with one social worker commenting that “flexible funding guidelines are helpful” (Participant 5).
Most (nine) participants expressed concerns with aspects of staffing for the EI programs. As one social worker summarized, “staffing is a big issue–we are trying to keep ourselves above water in that respect” (Participant 5). Broadly, there appeared to be two major issues associated with staffing, namely, problems with recruitment and retention and difficulties arising from having mostly part-time positions. The most commonly cited concerns with staffing were to do with recruitment and retention of EI staff–-“a major issue is that we have too few staff hours...this is related to both funding and being able to fill positions” (Participant 10). In particular, staff reported that their teams had difficulties keeping with physiotherapy positions filled, although similar difficulties were experienced with a range of occupation types. One EI officer felt that the significant difficulties experienced with staff recruitment and retention were due to her team's rural location, stating that “there are a number of therapy vacancies...this is in part because this is seen as a retirement area, not an area with a paediatric therapy focus” (Participant 3). Although participants typically commented on having difficulties with filling positions, staff from one EI program reported that “the centre is fully staffed at the moment” (Participant 6).
Participants commented that the staff recruitment and retention issue was not adequately addressed by their organization, and some provided suggestions for ways in which this problem may be dealt with. One stressed the need for backfilling vacant positions and also suggested that “better initial recruitment strategies are needed, especially for physiotherapists...there is this thought that if a physiotherapist applies you take them, you barely even give them an interview because they are so scarce” (Participant 4). Some reasons for the current recruitment and retention problems were proposed by participants, including pay disparity across government sectors and NGOs, as well as “career structure and support” (Participant 4).
Participants felt that transdisciplinary and interdisciplinary approaches were useful in compensating for staff vacancies (provided staff members were experienced in these approaches). However, two participants discussed concerns regarding a perceived lack of support for new and younger/inexperienced staff. One of these participants, a physiotherapist stated “younger therapists need more support generally, and to give them more capacity to work within a transdisciplinary model” (Participant 4).
Participants often raised concerns about the large number of part-time positions in the EI problems. These concerns were generally in relation to the timetabling difficulties that resulted from this situation, “having part-time staff impacts on accessibility as this limits the availability of appointment times that can be offered” (Participant 10). One speech pathologist felt that “it would be good to have the financial backing to employ full time therapists—not see more children but do more work for each child, and for better planning and quality improvement” (Participant 2). Finally, although part-time positions were perceived as being somewhat problematic, staff conceded that they were easier to fill, “part time positions are attractive,” and many felt that the flexibility that part-time positions afforded them was a major benefit of their job.
Under and unmet needs
In addition to challenges in meeting the demand for services, responding to the complexity of child and family needs, and associated inadequacies in resources, all participants identified some areas of need that were generally not well addressed by their EI programs or other service provider organizations. Program staff members discussed under and unmet needs in relation to three broad areas: (1) therapy and allied health/medical services, (2) funding for equipment, and (3) family support. Therapy and allied health/medical services were identified as being underserved areas for children and families accessing the three EI programs. In addition to the need for more therapy within their own programs, staff highlighted the need for improved access to private therapy services for families who wanted to supplement what they received through EI, as currently “it may also be that families are not be successful in finding private therapists with experience, and then there is also an issue of finding the money to pay for private therapy” (Participant 10). Staff also reported that therapy vacancies were an issue across sectors and organizations and hence “there is no point in referring families on if the other agencies have vacancies...the child then won't have a therapist” (Participant 3).
Three participants discussed the need for better access to funding to obtain equipment. Participants felt that funding should be easier to access, and that the amount provided to families should be greater. One of the participants stated, “government funding is increasingly difficult to get...this is due to an increased demand for resources and funding (there is more technology available as well as more client numbers)” (Participant 7). Another participant highlighted the fact that “there is still a big gap when it comes to equipment—especially costs for children that have high level physical support needs e.g., wheelchairs, transport etc” (Participant 8).
In the area of family support, the main under/unmet needs identified were related to respite and sibling support (identified by four participants each). Service providers identified the need for both in-home and emergency respite. Two staff members reported that their NGO offered respite, but that the level of service offered was insufficient for current levels of demand. As one participant put it, “you need to grovel and beg for funding for...respite, and you used to be able to get respite more readily” (Participant 2).
As with respite, participants reported that current levels of sibling support were inadequate, stating “the needs of siblings are largely overlooked” (Participant 3). This participant added, “more sibling groups are also needed as existing supports such as My Time groups are mostly offered during working hours”. Other areas of family support were perceived as being lacking, including support for the transition to school (two participants), advocacy, informal parent groups, men's/father's support, behavior support, and social support for older children (one participant each).
In addition to discussing under and unmet service needs, participants also identified populations they felt were unable to access existing services and supports. As one participant stated, “our eligibility criteria are quite strict with the result that many children are ineligible for the service” (Participant 3). Three participants reported that children who have milder levels of disability are often ineligible for services. One discussed a strategy that their EI program had adopted in response to the needs of this group, commenting that “we encourage these children to attend our playgroups. This way we can provide a service to a lot of children together, especially those with similar needs” (Participant 5). School-aged children were also underserved according to one participant, who discussed educational therapists and reported that “there is a gap in services as children get older. Therapists in school focus on educational needs only and families still need ongoing support at home and with equipment” (Participant 1). This statement reflects the fact that the focus of school-based therapy services is to enhance education programs and outcomes for students and supports outside of this scope are not provided by school-based therapists.
An analysis of participant responses revealed important similarities as well as some differences across staff members in how they perceived their EI programs. Overall, participants felt that services delivered through the three EI programs were of a high standard, provided an opportunity for them to intervene early on in children's lives, and offered a wide array of services/supports to meet the varied needs of children and families. Providers perceived that they delivered services in a flexible, family-centered manner and felt that they and their colleagues possessed both positive personal qualities, such as dedication, and also well-developed specialist knowledge and skills. Team members felt that they worked effectively with each other as well as with other agencies to achieve common goals for children and families.
These findings regarding positive aspects of service provision were consistent with the results of other components of this evaluation as well as the broader EI literature. In the quantitative section of this study, which included completion of the Measure of Processes of Care-Service Providers (MPOC-SP) (Woodside, Rosenbaum, King, & King, 1998), a measure of family-centered service delivery, program staff generally rated family-centered behaviors as occurring to a fairly great extent. Average scale scores for both initial and follow-up data collection phases fell between 5.2 and 5.75 on a 7-point scale. The highest rating on the MPOC-SP was for the perception of treating people respectfully, demonstrating that staff viewed the parent-professional relationship positively. In fact, the overall evaluation findings found that the relationships between families and practitioners were a particular strength of the EI programs and provided a solid foundation for the delivery of high-quality services.
Despite the strong endorsement of the quality of EI services provided, participants identified several challenges. They stressed the need for increased funding for equipment, more accessible private therapy services, and improved planning/support for key transition events such as commencing schooling. This finding is consistent with the broader literature, which indicates that families of children with physical disabilities accessing EI often have numerous unmet needs. Sloper and Turner (1992) found that families identified several gaps in service provision, reporting an average of six unmet needs. Parents consistently identified provision of information on their child's condition as one of the main unmet needs.
The NGOs experienced ongoing difficulties with the recruitment and retention of suitably qualified staff throughout the evaluation period. Difficulties were observed across regions and professional disciplines, with physiotherapy positions reportedly being the most problematic. In some instances, the NGOs reported difficulties with recruiting new staff; however, CPL staff in particular reported that their primary difficulty was with retention rather than recruitment. Caseload numbers indicated the need to employ more staff; however, the NGOs were unable to fund additional positions. The NGOs reported having vacant positions for up to 6 to 12 months in some instances and were generally unable to provide backfill for vacancies.
Participants acknowledged that often the reasons that there were difficulties with recruitment and retention of staff were largely attributable to wider service system issues rather than being under the control of individual NGOs. Service providers proposed some likely reasons for recruitment and retention problems, including pay disparity across government sectors and EI agencies. Specifically, staff perceived that the inequity of pay between Queensland Health and the NGO sector was a significant risk factor for maintaining adequate staffing levels. Furthermore, SCCTC did not employ any type of classification system, thus providing little opportunity for pay increases or formal career progression. CPL reported that limited funds for professional development funds impacted on staff training which in turn reduced staff retention.
Consequences of recruitment and retention difficulties included (1) inability to deliver optimal quality and intensity of services to children and families, (2) increased pressure on existing staff trying to “fill the gaps,” (3) increasing waiting lists, (4) inability to accept new referrals, and (5) adverse impacts on the parent–provider relationship. Furthermore, some participants felt that staff turnover was a barrier to providing transdisciplinary supports, particularly where teams had young/inexperienced staff members who did not have the necessary knowledge and skills to deliver transdisciplinary services. Research has shown that professionals require adequate support, training, and resources to become knowledgeable regarding the concepts and approaches of other disciplines and to develop skills across a range of discipline areas (King et al., 2009).
Overall, participant feedback about challenges to service delivery provided during these interviews was consistent with other project findings. In developing program logic models for the three EI programs (Ziviani et al., 2011a), a number of external factors affecting service provision were identified, including staffing difficulties and the complexity of referrals received. Providers identified issues around containing program costs, including expenses associated with making generic organizational services available to children accessing EI programs and hidden program costs, for example, office accommodation, and staff training/support.
The broader program evaluation also included similar in-depth interviews with families accessing the three EI programs, the findings of which have been reported elsewhere (Ziviani et al., 2011b). An analysis of staff responses revealed numerous similarities in their perceptions of the way in which the EI programs were delivered in comparison to families. As with families, staff generally reported that they were satisfied with the parent–provider relationship; however, problems with recruitment and retention of staff were raised by both groups. In commenting on the extent to which they felt the EI programs were provided in accordance with FCP, providers typically gave favorable feedback, although unlike families, staff reported intervention planning a strength rather than limitation of the programs. Staff highlighted the importance of being able to provide various EI services (not just therapy), mirroring feedback provided by families. Similar to families, staff raised concerns regarding the quantity of therapy services offered by the EI programs. The unmet needs identified by service providers were largely similar to those discussed by families. Both groups highlighted the need for increased funding for equipment, more accessible private therapy services, and improved planning/support for key transitions.
Feedback provided by service providers also differed considerably from that of families in other respects. Whereas families raised concerns about the development of family service plans and interagency coordination, service providers saw these aspects of service provision as being of a high standard. Furthermore, although families tended to stress the need for better information on their child's disability as well as the need for clarity regarding the services/supports offered by the EI programs, the focus of service providers tended to be on providing disability-related information.
Feedback from participants suggests that at entry to EI, staff members should provide families with loose guidelines around the potential intensity of therapy and other services, while also highlighting that service frequency depends on the specific needs and goals and each child and family. During FSP development, service providers and families could further discuss therapy frequency/intensity in relation to the family's specific goals. Without these consultations it is difficult for families to establish realistic expectations of what EI programs can provide. Often, dissatisfaction with services arises from a mismatch between families' expectations and what the program will realistically offer. Therefore, by setting clear guidelines, families are likely to have more positive experiences in accessing these programs. Aside from the focus on therapy sessions, service providers also need to emphasize the importance of families incorporating therapeutic techniques into daily activities and provide guidance on straightforward ways of doing this. It is imperative for families to understand that therapy is not simply just something that is “done” to their child by a therapist but also encompasses strategies that should be used as a part of daily life.
In addition, the length of waiting lists needs to be addressed, as in some cases wait times are incompatible with timely access to services, supports, and interventions during critical periods of children's development. With respect to enhancing access to equipment, EI providers should consider potential ways of pooling equipment items available for loan so that they can share these resources across regions and services/programs.
There is a need to develop an EI workforce strategy for the disability sector among NGOs focusing on recruitment and retention of professionals (particularly for rural-based and physiotherapy staff). In addition, support for less experienced practitioners and professional development opportunities and career progression should be addressed. Pay discrepancies between NGOs, government, and private sectors also need to be examined. Finally, the positive aspects of working in the area, such as the rewarding nature of the work, flexible working hours, and so forth, should be promoted. Enhanced recruitment and retention of professionals would also have benefits for children and families accessing EI, improving service access, capacity and quality issues, and better supporting the delivery of holistic, transdisciplinary services.
In presenting these findings, a number of limitations need to be acknowledged. First, we aggregated findings across three EI programs. However, despite these individual program differences, overall the feedback provided by parents was fairly consistent. Second, in qualitative studies the personal characteristics and backgrounds of the investigators have the potential to influence study methodology and the identification of themes and findings. The introduction of bias was minimized through the use of researchers from numerous disciplinary backgrounds, the use of audio recordings, and member checking (Padgett, 2008). Despite the limitations, the study findings highlight the ways in which staff deliver EI programs to children with physical disabilities and their families, including the challenges faced by professionals in this area of practice.
Overall, participants felt that services delivered through the three EI programs were of a high standard and provided an opportunity for staff to intervene early on in children's lives and offer a wide array of services and supports to meet the varied needs of children and families. Staff perceived services to be delivered in a flexible, family-centered manner and felt that staff possessed both positive personal qualities and well-developed specialist knowledge/skills. In addition to the positive findings, difficulties such as high workloads and insufficient resources were identified by all participants, who felt that EI teams were doing the best job possible within a service system struggling with high demand for services, staff shortages, and insufficient funding. The most important ongoing considerations and dilemmas are likely to be related to recruitment and retention of practitioners in the not-for-profit community sector, current funding levels (which do not cover all EI program costs), and an ever-increasing demand for services.
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Qualitative Interviews Guide
1. If information is not already known: Can you tell me about your professional background and about how long you have been working for your early intervention service?
2. Tell me about the services that your early intervention service is currently offering to children with physical disabilities and their families.
3. What do you think works well with the early intervention services provided?
4. What do you think could work better with the early intervention services provided?
5. Do you feel that the services being offered are family-centered?
6. Are you aware of any difficulties families may experience in accessing these early intervention services?
7. Can you suggest any changes that would improve the quality of the services offered?
8. In the time that you have been working with your nongovernmental organization (NGO), have you noticed any changes in the services that families require or the way that families need services to be provided?
9. Can you think of anything that families need help with that is not currently being provided by your NGO or other organizations?
10. Are there any factors that assist your NGO to provide a high-quality service to families?
11. Are there any barriers to your NGO being able to provide optimal services to families?
12. What is it about your NGO that has encouraged you to continue working for them?
13. Is there anything else you would like me to know about the way you provide services to children and families?
Interview Themes (N = 10 Participants)
Equation (Uncited)Image Tools
Equation (Uncited)Image Tools
attitude of health personnel; developmental disabilities; early intervention; qualitative methods; young children
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