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Early Childhood Intervention Family Exit Interview Report 2017

Noah’s Ark Inc. 1283 Malvern Rd, Malvern VIC Australia 3144 T (03) 8823 8600 F (03) 8823 8688 Published by © Noah’s Ark Inc. 2017

ECI Family Exit Interview Report 2017

Executive Summary Overview Noah’s Ark first conducted interviews with a random sample of families who had exited Early Childhood Intervention (ECI) services as part of the Family Feedback Project in 2010. In committing to completing the Family Feedback Project annually from 2012 onwards, (when it was renamed Family Exit Interviews), Noah’s Ark has shown that this is a valuable tool in their continuous improvement system and it highly values the information the interviews provide. This report provides an outline of the findings from interviews completed with families who exited Noah’s Ark services from April to December 2016). For the second year, as we continue the transition to the National Disability Insurance Scheme (NDIS), this report includes feedback from families who accessed both ECI and NDIS services. The purpose of the Family Exit Interviews is to identify strengths and opportunities for

improvement in service and practice through exploration of the experience of families. Noah’s

Ark is committed to listening afresh to the parent voice and using the findings to inform

recommendations for future practice. A list of key recommendations have been compiled from

parents feedback and will now be considered by Noah’s Ark’s Quality Committee as an important

part of the continual improvement process.

Findings Overall, families were positive about their experiences with Noah’s Ark and very satisfied with the services received. The areas parents were most satisfied with related to the Key Worker model, the experience of service delivery in natural environments, and the ability to collaborate and coordinate services and transitions. In summary:

➢ The majority of families were very satisfied with the overall support they received from Noah’s Ark.

➢ The first contact families had with Noah’s Ark was generally reported as being very positive.

➢ Most families highly regarded the ongoing positive working relationship they had with their

Key Worker.

➢ Almost all families spoke highly of the personal qualities of their Key Workers, describing them as “friendly”, “knowledgeable” and “supportive”.


➢ Almost all families valued service delivery in the child and family’s natural environments.

➢ Many families spoke of the Key Workers strength in coordinating and partnering with other services.

➢ Most families reported that the Key Workers expertise in facilitating and support transitions

to kindergarten and school was a real strength.

➢ Some families would have preferred that their Key Worker was from a different discipline, and others would have preferred more direct support from individual therapists from each discipline.

➢ Some families wanted a more “hands-on” approach with Key Workers interacting more with their child and demonstrating implementation of strategies.

➢ Some families commented that saying goodbye to a Key Worker was difficult; particularly as a key transition was occurring. Many said that they would have felt re-assured by being able to continue service until they were securely settled in the new system i.e. school.

➢ Several families reported that they felt stressed and overwhelmed by sessions and these didn’t always have a positive impact on their mental health.

The interviews highlighted areas for improvement, particularly under the following themes:

➢ Support in preparing for the future

➢ Information gathering and assessment.

➢ The Key Worker model and flexibility in service delivery.


Introduction The purpose of the Family Exit Interview was to gather information about the lived experiences of families who have recently left Noah’s Ark ECI and NDIS programs. Feedback was gathered across a range of practice areas and used to identify strengths and areas for improvement. The information was also used to inform recommendations for future practice. The Family Exit Interviews (formerly called the Family Feedback Project) was first conducted in 2010 and then annually from 2012. In 2017 the project was completed by Jane Hosking (Project Worker) and overseen by Kerry Bull (Senior Manager, Services).

Methodology Semi-structured phone interviews were conducted with families who had left Noah’s Ark ECI and NDIS programs between April - December 2016. Team Leaders provided lists of exiting families to Noah’s Ark Head Office. Families were selected from a master list of potential participants using a systematic sampling approach. This year we also sent out an introductory email to all families for which we had email addresses one to three weeks before we made telephone contact. This email gave families the option to contact us to make an appointment time for a phone interview. This appeared to contribute positively to the efficiency of the interviewing phase. While only 16 families made contact to schedule times, many commented on the email and appeared orientated to the project when they were contacted by phone. Two different interview templates were used to gather information for this project. Interview One (see Appendix 1) was the main set of interview questions. The semi-structured interview format explored thirteen key areas: Initial visit, Key Worker model, Developing Goals and Service Plan, Gathering Information, Linking to Supports and Services, Developing Strategies, Effectiveness of Intervention, Experience of Service Delivery, Transdisciplinary Team, Evaluating plans and Outcomes, Support for the future, Rights and Advocacy and Overall satisfaction. Open ended questions were used to gather qualitative information. Quantitative data was also gathered by asking participants to rate their experience of each area on a scale of 1 – 10, where one was the lowest and ten the highest. Where families had left Noah’s Ark service due to changing to another service provider or dissatisfaction, Interview Two was administered (See Appendix 2). Interview Two also used a semi-structured format of open ended questions to gather qualitative information regarding the following areas: Why the family chose Noah’s Ark as their service provider; How the service provided matched the family’s expectations; The reasons for leaving Noah’s Ark; What they liked about Noah’s Ark; Their experience of having a Key Worker; What Noah’s Ark could have done differently; and, Their experience of raising concerns. No quantitative data was collected from Interview Two.

Interview One took approximately 15-25 minutes to complete whereas Interview Two took an average of 10-15 minutes.


Figure 1. Process of decision making about which interview to complete.

The time the interviewed families were receiving services from Noah’s Ark for their child ranged

from four months to two and a half years. The majority of these were with Noah’s Ark for four

months to eighteen months. Five families reported they were with Noah’s Ark for two- four and

a half years. Six families had received services from Noah’s Ark for multiple children. Two

families stated they were intending on returning to Noah’s Ark after completing NDIS pre-planning

and several others commented that they were also considering returning.

Also of note, were the significant number of families who spoke about being on a long waiting list for ECIS. Although families knew this was outside of Noah’s Ark’s direct control, they urged us to continue to advocate for better awareness of the need for earlier ECI services.

Participants A total of 530 children, from 521 families exited Noah’s Ark services between this period as there

were a number of siblings who received service. This consisted of 482 families receiving state-

funded ECIS and 48 families receiving services through the NDIS.

Complete Interview 1 Complete Interview 2

Family agree to participate in interview

Initial questions

Family moved on due to age/eligibility/transitioning

to school

Family moved to another service provider


A total of 105 parents participated in the project, representing 19.8% of the sample. Of the 105

families interviewed, 92 interviews were conducted with families from ECIS and 13 families were

from NDIS. 91 completed Interview One. and 14 completed Interview Two.

Of the 13 NDIS families, two had exited Noah’s Ark as their child was starting school and were

ineligible for Noah’s Ark services at that time. The remaining families (n=11) left Noah’s Ark to

commence with another provider.

Six families who completed the interview were still receiving services from Noah’s Ark with

another child. The families were asked to complete the interview questions in relation to only the

child who had exited the service.

Team Leaders identified twenty-one families as requiring an interpreter. Thirteen of these

required a Vietnamese interpreter and the others required an Interpreter for the Karen, Japanese,

Timorese, Tamil, Turkish or Arabic language. In 2015 a number of Vietnamese families

participated in the interviews through an interpreter, and provided valuable information to the

project. It was also felt that richer information may have been received from some interviewees

with the support of an interpreter. We will endeavour to consider solutions for this in the future.

Most interviews were completed with the child’s mother during business hours. Six interviews

were completed outside business hours, with two of these being to accommodate fathers also

participating via speaker phone. In addition, four fathers and two foster-carers completed the

interview process, with one grand-mother also participating via speaker phone. All the interviews

were conducted between late July to mid-September 2017. Participants were informed that their

interviews were confidential and that their name would not be attached to their responses.

Consent was also obtained to use de-identified comments in Noah’s Ark reports or brochures.

We have used the Noah’s Ark ECIS Process Map from the Noah’s Ark Practice Manual TM, to group the feedback from family’s. The Process Map encompasses the following key phases:

Figure 2. Noahs Ark ECIS Process Map


Results Quantitative data was gathered by asking participants to rate their experience of each area on a scale of 1-10, where one was the lowest and ten the highest. Figure 1 shows the combined results from all participants in the study who completed Interview One (n=91).

Figure 3. Family Experience of Noah’s Ark 1. WELCOME: a) The Initial Visit/Contact As in previous years, most of families reported being referred to Noah’s Ark through the Victorian Governments Department of Education and Training Central Intake process. Some families said they had chosen Noah’s Ark as their service provider after a recommendation from their Paediatrician or another Service Provider. A few families reported that a friend of the family recommended Noah’s Ark, or that they had researched it online or on social media. The majority of visits took place in the family’s home and this was highly valued and appreciated. Two families said their first contact was made during an open day, and one had their initial visit in the Noah’s Ark office.

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QUANTITATIVE RESULTS 2017


Most families said they were very satisfied and felt comfortable during their first visit/’s, although many spoke of it being an overwhelming time for them. Many parents said they liked:

➢ the information about ECIS and Noah’s Ark ➢ the information about what service Noah’s Ark could offer them ➢ the opportunity to talk, ask questions and be listened to ➢ the emphasis on a family-centered approach ➢ that they felt comfortable with the staff and confident in their ability to help ➢ when the Key Worker showed interest, and interacted positively with their child ➢ that the service would be provided in their child/family’s natural environment

"I was dumbed with recent diagnosis - complete whirlwind - she met us where we were at and we reaped the benefits.” "Team Leader and Key Worker were both very professional, well-prepared and answered my many questions.” Several families commented that it was good to meet the Team Leader (TL) and understand their role and availability. "I remember it well- very positive. I appreciated knowing who the TL was and who I could contact if needed.”

Several families also said that they didn’t know what to expect, but most were clearer after initial visit/s. "Noah’s Ark and early intervention were a new concept for me but it quickly made sense." “It turned out to be better than I initially thought- they gave me tools and resources instead of working directly with my son.” "It took a few visits to understand the system. It was a lot of new information to digest. Maybe be aware of where parents are at and adjust accordingly. Does it all have to be done day one or two?” b) The Key Worker Model Most families responded positively about their experience with the Key Worker model. Many families spoke very highly of the personal qualities of their Key Worker; describing them with words such as friendly, non-judgemental, patient and Knowledgeable. There were many comments from families about:

➢ how they had built a great working partnership ➢ having one Key Worker who really knew the child and family was an advantage ➢ having confidence in the Key Worker’s ability to support and advocate for them ➢ how they valued the Key Worker’s role in collaborating and coordinating services


“We formed a great partnership. Our Key Worker was in-tune with what I needed at particular times, flexible to change goal posts and always very helpful.” “My partner had different views…it really helped having the Key Worker there. She helped keep us all working together to support our son.” Several parents spoke of changes in Key Workers throughout their journey. Although they knew this generally couldn’t be helped and many found the transition smooth, there were several who felt like it caused significant disruption to their child’s progress. “It was hard to explain three different Key Workers to our child over a six-month period. He is not good with change.” “Our Key Worker left, and we had to wait three months for a replacement…I didn't really understand how the system worked. I eventually called the Team Leader and she sorted it. I felt like we were starting again though, having to repeat everything. We wasted precious time too.” Several parents also commented on how they would have preferred their Key Worker to have been from a different discipline. “It could have been much better if our Key Worker was a Speech Pathologist. The process felt so convoluted. Key Worker would video sessions then take it back to office for feedback, then relay feedback to me the next session!” “I had been waiting so long for ECIS, and had been paying for therapy too. My daughter really needed OT- it had been a gap in our journey- but I was told that I would be allocated whoever was available.” 2. EXPLORE: Developing goals and a Family Service and Support Plan (FSSP) Most families spoke very highly of the FSSP process, reporting that they felt at the centre of the process, and that the goals reflected what was important to them as a family. Many also commented that they really valued the collaborative process with the Key Worker and the knowledge and expertise they brought to refine the goals into something that was realistic and achievable. Most families liked that the goals:

➢ were led by the family’s priorities ➢ considered individual child and family needs ➢ were developed and refined with the Key Worker’s expertise ➢ were functional and realistic ➢ Focussed on the short term and how these supported medium and longer term aims.


“We were in full control-and were always backed up by our Key Worker. She would say ‘what do you want to do?’ and then she helped me achieve that.” Some of the most meaningful goals commented on by families were related to communication, sensory and behavioural concerns, and self-care-skills (particularly toilet training and eating). Goals around successful transition to school were heavily represented, with some families commenting that they were forced into this focus due to the delays in getting support. “When we finally received service there were lots of goals I would have loved to explore but we had to focus on getting him off to school as we had run out of time.” A few parents spoke of pressure to set extra “less-meaningful” goals, and the cultural mis-match in this process. A couple also questioned the timing of the FSSP process. “I felt pressure to set other goals besides the speech ones we wanted to focus on.” “Personally, I didn't find it helpful- I had big goals, and didn’t need intricate detail. I just wanted to get on with it!” 3. INVESTIGATE: Information Gathering and Assessment a) Assessment While some families spoke about formalized assessments, most frequently they described the process of gathering information as being informal, and in the child’s natural environments. Most families really valued this and felt it helped form a realistic picture of where their child was at. Many parents didn’t understand what a “formalized assessment” was without examples. “We had to use a softly-softly approach to gathering information as my child was very anxious. The Key Worker got a good idea of where he was at with observation in his home environment where he was comfortable.” “It was great that our Key Worker was willing to just focus on kinder-school transition, which was our biggest concern. She did observations at kinder and spoke with educators and then visited the school.” “We first focussed on Speech Assessment, then a Sensory Profile, combined with other observations. This all fed into making the Autism Assessment a smooth process in the end.” Timing of Noah’s Ark’s involvement also influenced whether any formalized assessments were completed. Several children had private assessments completed whilst they were on a waiting list for ECIS. Approximately 19% of families reported having formalized assessments completed. About 60% of these were completed by Noah’s Ark. Frustration was shown by some parents who felt that assessment was “endless and overly time-consuming”


“We felt like lot of time was wasted by our Key Worker getting a picture of my child when assessments were already completed prior to Noah’s Ark. We had to talk about everything all over again with another therapist, and it just reinforced how frustratingly slow the system was in supporting us. There needs to be more coordination.” b) Linking to supports and services As in previous years, the ability to collaborate and form partnerships was generally considered by parents as a real strength of Noah’s Ark’s service. The variety of service types and sectors that Noah’s Ark partnered with included Paediatricians, other therapists (private and from other services), Respite, Early Childhood Education and Care and School staff. The ways that parents commented they were supported and encouraged with participation and inclusion in their local area were dominated by information and support in choosing and accessing a school, kindergarten and childcare. Other areas that families reported Noah’s Ark providing information and support on included:

➢ Information on playgroups and local community activities and events ➢ Connections with other therapists and specialists for purpose of assessment, diagnosis

and ongoing support ➢ Information on support groups, respite and services for the whole family

“We really valued the regular phone calls and emails to suggest groups or supports that might be of interest to our family. She thought outside the square, and encouraged us to do so too.” “She was really helpful with organising respite, corresponding with paediatrician and supporting child care and kinder. Great partnerships also with the health care service.” Parents commented on how they valued Noah’s family-centred, holistic approach to linking and partnering. “It was great. Our Key Worker linked us with kinder, attended many meetings, and set-up a communication book between all services. She went above and beyond and even helped support me with housing services.” A few parents spoke of making requests that were not followed up or just being given phone numbers that they felt unable to follow-up themselves. “Our Key Worker was not great at following up. I asked several times about art therapy and other therapies. She was always getting back to me, but never did. I don’t think she thought it was a good idea?” “She (Key Worker) gave me a phone number for respite but then never asked again, and I never made the call- It was too hard at that time.”


4. STRATEGY: Developing strategies Most families were happy with the way strategies were explored and decided on with their Key Worker: As with the goal setting process, families appreciated and relied on the Key Workers knowledge and expertise in coming up with new and creative strategies. As with goal setting, the family-centred approach was again valued highly. “She (Key Worker) stuck with us to find things that worked for our family. That was what I valued the most.” “Our Key Worker always had a great range of creative new play ideas which together we tweaked utilizing my sons needs/interests. I had never thought of using his interest areas as a strength to teach new skills.” A few parents spoke of feeling overwhelmed by the process of working on strategies and that there was too much pressure on parents to direct this process. They felt that the Key Workers expertise was under-utilized. “Lots of time they (Key Workers) tried to get me to come up with solutions- I needed options- their expertise!” 5. IMPLEMENT: Putting the plan into action a) Effectiveness of Intervention

Most parents reported that overall the intervention provided by Noah’s Ark was very effective. A good relationship was often reflected on as a key component to success. Many parents also commented on:

➢ the regular checking back in with how they were going ➢ the clarity that written records and information provided to support and guide them daily ➢ the flexibility in adapting to individual child and family needs and changing priorities ➢ the role their Key Worker played in collaboration and coordination.

“I still have my family folder and refer to it. It kept us on track. “ “We had a great relationship was the key Worker, and this translated to great gains with our son. The relationship took time to develop, and the Key Worker was very patient!” Many families reported that they a very honest and supportive relationship with their Key Worker and if required, felt able to discuss any concerns or differences of opinions they had. “We had a great partnership and often had robust discussions about where we were heading. I really appreciated her questioning me too to ensure we remained focussed and the team was on track.”


Some families commented that although they felt they had a great relationship with their Key Worker they didn’t want to get them in trouble or upset them by “complaining” A few parents felt that their Key Worker had been unable to provide them with tangible enough strategies or targeted support even after some followed-up with the Team Leader. “We researched Noah’s Ark and like the Key Worker model, but found we had quite specific challenges with our daughter which we felt needed more expertise. We felt unable to target the support she needed and questioned the level of specific expertise of our Key Worker. We did follow this up with the Team Leader, who was very nice, but unable to help re-assure us either at that time.” There were several families who felt that intervention would have been more effective if it had been more “hands-on” with their child. A few of these parents reported they were informed that this wasn’t part of the Noah’s Ark model. “You don’t know what you don’t know. I learn from seeing therapists work with my child, and then I can follow that up myself with more confidence throughout the fortnight. We all needed to bring our expertise to the table- we knew our child, and the Key Worker had professional expertise which she could have demonstrated.” “We wanted to streamline our services, and while our Key Worker was great, we felt that we weren’t getting the same results for the time put in that we were getting from other more hands on services.” b) Service Delivery Parents were generally very satisfied with service delivery overall. Many families commented on how much they appreciated the service across the key settings their child and family participated in, and the consistency of approach that this helped facilitate. “Brilliant- met us exactly where we were at! Our Key Worker saw the real child where she was comfortable in her home environment and was able to advocate for her needs in childcare.” “Great flexible approach. I was working Full time and it was wonderful that the Key Worker could still work with my child and day-carers. Key Worker was always great at communicating with me so I could follow up at home too.” Quite a few parents also spoke of how much they valued the group opportunities which Noah’s Ark had offered. It provided them with new skills in specific areas, and an opportunity to link up and share the journey with other parents. “The Toilet Training program offered at the office was very timely for us. It was also great to meet other parents who had similar struggles and not feel so alone.”


“’More than Word’s” was great. We learnt so much and got so many new ideas. I particularly loved meeting other parents and helping each other. I still keep in regular contact with two of them” A couple of parents spoke of concern over a Key Workers reluctance to work with their child primarily in kinder or day-care. Two parents were disappointed in the Key Worker not suggesting or supporting an alternative setting which may have been more successful. “I was working full time in the city and the Key Worker seemed reluctant to see child primarily in day care. It was very difficult for me to make it work any other way. I spoke to the Team Leader eventually- I didn't want to get Key Worker in trouble, but I wanted my child to get the most out of therapy. “We didn’t feel our child was having any success in the home environment as he was too relaxed and unable to be engaged in any activities. It was very discouraging. I wish I’d asked if we could try sessions at the office or kinder to begin with as I think he may have been more focussed. Instead I made excuses and cancelled sessions as I didn’t feel up to more discouragement.” A few parents also spoke of the pressure and “weight on their shoulders” they felt from sessions. “I was overwhelmed- I have a cupboard of guilt which I have a student now coming to go through with me. I was-not confident to say, "I can only work on … “, instead I kept making excuses for cancelling sessions.” Timing of access to ECIS services was commented on by several parents, even though they knew it was not in Noah’s Ark’s direct control. Many families spoke about being on a waiting list for six to eighteen months and therefore nor receiving a lot of ECIS. Several also spoke about their frustration around delays with diagnosis and difficulty in getting support for referral to ECIS. “Timing couldn’t have been better. My son had just been diagnosed and we all formed a great relationship with the key Worker.” “Late diagnosis and a waiting list for ECIS….I was a mess and we only had four months to sort everything out and get him off to a positive start at school!” “We only had six months with Noah’s Ark and I felt like it was a lot of pressure on the whole team –particularly my son. We couldn’t afford private services.” “Too little too late…I already had all of my therapists organised and didn’t need the added complication of a key worker.” c) Transdisciplinary Team Many parents commented on how much they valued having one Key Worker who really knew them, but who also had a team of professionals behind them for information and support as


required. Several parents commented on how it helped to meet these team members, even though they often remained behind the scenes. "Our Key Worker had great overall knowledge of child development. We decided to get a physio consult at one point, but the rest of the time we had confidence that our Key Worker was able to keep things on track.” “It was great to meet other members of the team at open days and through “More than Words” and the Toilet Training program. Everyone seemed to work so well together.” Several parents also felt that they were not aware of, or were not given access to the full array of services at Noah’s Ark. “To be honest I felt a bit disadvantaged. I knew through Facebook and other friends who were involved with Noah’s Ark in other locations that many of them also had access to other therapists sometimes, as well as to their Key Worker. I was told that my Key Worker would just seek support from those therapists indirectly.” “It (the Key Worker model) felt a bit arrogant...how could one person be all things to all people. I felt like the therapist didn’t even believe in it but couldn’t help us other therapy from Noah’s Ark.” 6. EVALUATE: Evaluating the goals and outcomes with families Most families reported that they could see that their strategies were working by just observing the changes in their children. In addition, many families commented that they really valued a more structured approach to reviewing goals regularly to see how they were progressing. “I could see the progress in my daughter, but I would sometimes miss little things. We re-assessed how we were going with goals and regularly celebrated our achievements. It became very important.” “I was reluctant to spend time on this initially, but with Key Workers gentle encouragement I really enjoyed sitting down regularly and measuring where we were at. It kept us on track too.” A few parents said that they felt rating goals was “overly complicated” and not helpful. “Rating goals was so complex and took so much of our precious time, when I just wanted to keep working on our priorities with the little time we had left” A few parents also commented that they felt pressured to constantly achieve outcomes and it didn’t help their mental health. A few also commented on feeling like the Key Worker was reluctant to make changes, even when progress was slow and families were asking for them. “I understood that the intervention was supposed to build my capacity, but to be honest this whole process wasn’t helping my mental health. I felt like I was constantly being asked to perform and my Key Worker didn’t seem to pick up on my stress levels. At least when I’m not


doing so well, with our fortnightly private therapy sessions I feel like (son) is getting some hands-on inpu.t” “It wasn’t personal, everyone was lovely, it just wasn’t working for our son. I expressed this, and was told by director (Team Leader) that the other therapy was only a one off. I knew that you could get blocks of therapy in other places.” “We felt for the amount of time my wife and I were putting in with our son, the outcomes were not there. We were both very invested, but the program was not able to be targeted enough. With our research and on the website Noah’s Ark promised so much, but didn’t seem able to deliver at that time in our location.” 7. MOVING ON: a) Support in preparing for the future Most families reported that they had plenty of notice about the end of Noah’s Ark services, and their Key Worker had provided them with information and resources that helped them transition to the next stage. Parents were overwhelmingly positive in particular about Noah’s Ark’s involvement in the transition to school process. The level of support received varied, often it appeared, in relation to the level of supported requested by parents. “Our Key Worker came with me to school as requested and was "my eyes". She helped guide me with Helping Children With Autism (HCWA) funding planning and gave honest feedback when asked.” “My Key Worker went above and beyond. Because we received ECIS help so late-start of November-, she stayed involved for part of term one at school and checked in to see if we needed any help. I don’t know how we would have managed without her?” “Our Key Worker offered to help with school transition, and she did meet with the school once, but I felt Ok about doing the rest myself. All of the support had led to us being prepared for this transition. It was good to know the Key Worker was there to run things by if needed though.” “Key Worker gave me lots of NDIS information and guidance and took things off my hands with transition planning. She knew me so well and could see that I was completely overwhelmed. She just needed to drip-feed me.” A few felt that there was not enough emphasis on the support given to ensure a smooth transition to the next stage. Several parents suggested it would be good to have been able to have Key Worker support continue for at least a few weeks into the new school year. “It would have been wonderful to be able to have one or two sessions at the start of the next year to just check back in, and even share how well things were going with our son thanks largely to all of our Key Workers support over the years.”


“The level of input by a Key Worker can't be replicated by other therapists at key critical points of transitions. It would be great if they could continue even touching base for the first couple of months.” Several parents also spoke of how hard it was to say goodbye to someone who had played such a significant role in your family’s life. “She (Key Worker) had become almost a family member and I was grieving the imminent loss.” “We were so happy with Noah’s Ark as a service, but thinking about it now, it was a bit disappointing the way we finished. Our Key Worker had to cancel the last session, and then that was it. Many parents spoke of how they would love to have access to Noah’s Ark’s services again. Some found it hard to articulate what that would look like given their children were now in the school system, but the top three supports that parents said they would value now were:

➢ Inclusion support and coordination across environments ➢ Bursts of therapy- specifically Occupational Therapy and Speech Pathology ➢ Social Skills programs or support

“It is evident now that our son really needs more work around building his social skills and ability to form friendships.” “I would love Speech Pathology at home and as our teacher is not on board, I would love support around that too.” “As good as my other therapists are, their level of support cannot replicate what I have lost with my Key Worker leaving. I miss that support at home and in school where my son is spending so much time now.”

b) Rights and Advocacy

Many parents reported realizing that becoming a strong advocate for your child was very important and improved advocacy was a by-product of their involvement with Noah’s Ark. Several spoke of the importance of being supported to understand their child more so that they could be a good advocate for them into the future. A few parents commented on their apprehension at being able to advocate effectively for their child without their Key Workers constant support. “My Key Worker helped us so many times along the way to know who to speak to and when. She always helped me make a plan, encouraged me, and stood beside me when requested.” “Noah’s helped me learn a lot about my child and this has helped me to feel that I can support him along the way. I am determined to do my best for him.” “We had just come out of a bad family situation and I had bad confidence. I am worried about how I will manage to support my child at school without my Key Workers help.”


A few parents didn’t seem to feel that this was something that they had needed support with, or was a priority for them. “This (advocacy)wasn’t a focus given that we only had such a short amount of time with Noah’s Ark. I guess it would have been good to know more about our rights?”

Overall Satisfaction

Most parents reported that they were very happy and satisfied with the support they had received from Noah’s Ark. Some of the key areas of Noah’s Ark’s intervention that they indicated were most valued or useful were:

➢ Support with the kindergarten and school transition process ➢ Relationship with Key Worker- one person who is always there for support and advice ➢ Family-centred support in the child’s natural environments ➢ Strategies that made a real difference to lives on a daily basis ➢ Professional advice and support around inclusion

“Such a positive process from start to finish. Someone came in to partner with me, guide and re-assure me that I wasn't to blame. We worked on so many things that made a difference on a daily basis.” “The Key Worker really knew our family and how to get the best from us. Everything was tailored to what was best for our child in helping him to reach his potential and live a happy life.” “The relationship we formed with our Key Worker was the key to our results- we are- coming back to Noah’s Ark because of this.” “Not earth shattering just consistent non-judgemental support. Someone on our side to encourage and guide us in our home, in the kinder, and with school transition.” “The Key Workers saw things from a different view and their strategies and support were endless.” “She (Key Worker) met us where we were at and made us aware of everything- all of our options. She built up our resilience and ability to advocate.”


Some of the key themes that emerged as having the most impact on family’s overall satisfaction with Noah’s Ark service include:

• ECIS waiting list length and timing of diagnosis. This impacts the length of time a family receives Noah’s Ark services, the focus of the intervention and the stress levels of a family.

• Having multiple Key Workers and the timing and support around the transitions between workers.

• Preferring a Key Worker from a different discipline or not feeling they have enough or regular direct access to other specific therapy services as part of the transdisciplinary approach.

• Preferring a more “hands-on approach” to therapy.

Conclusion

As with previous years, the feedback received from families about their experience of Noah’s Ark services was generally very positive. The results indicate that the Key Worker model continues to be highly regarded, as does Noah’s Ark’s commitment to delivering services in natural environments. In reviewing Noahs Ark’s progress in direct response to family recommendations made in recent annual Family Exit Interview reports, there is pleasing evidence that:

➢ there is improved consistency in the way the Noah’s Ark model is articulated and delivered across all services. This is evidenced by the amount of families using similar language to describe service provision and their clear understanding of for example, the FSSP, COPM and RBI processes.

➢ Families reported consistently strong levels of confidence and understanding in the “checking in” and feedback processes or systems in place, including the role of the Team Leader.

➢ Noah’s Ark’s support in preparing, resourcing and transitioning children and families for school was overwhelmingly rated as exceeding expectations.

Noah’s Ark is committed to considering the Recommendations from this year’s Family Exit Report, to continually improve our services and support best outcomes for all families. As we transition to the NDIS, flexibility in service delivery and responsiveness to the family voice will be paramount, in order to continue to form positive partnerships with families and best support and empower them.


Appendix 1

FAMILY EXIT INTERVIEW 2017

INTERVIEW 1

No:

Site:

Hi. My name is ______ and I am from Noah’s Ark. I am contacting families who have recently left our service to get some

feedback about your experiences. You may have received an email from me about this call. Would it be possible to ask you

some questions about your time with Noah’s Ark?

This discussion takes about 15 minutes to complete. Would it be possible to have that discussion now or will another time suit

better?

I will ask you a range of questions. Noah’s Ark values your honest feedback. This information will be used to improve services

for the future. This discussion is confidential. I will be writing down your responses but your name is not attached to those

answers.

Do you give permission for me to take notes of our conversation?

With your permission Noah’s Ark may also use some of your comments in a report or brochure; again, this would be completely

anonymous. Do you give your consent for your responses to be used for that purpose?

ON COMPLETION:

Thank-you for your time. We really value your feedback and us what parents tell us to change the way we provide our services.

As I mentioned earlier, we will be writing a report. It will be on our website in about two months. You will be able to find it on

our website.

* Each question area has a lead question and then follow up questions to explore in more depth. The lead question has been

identified as the most important information we would like to gather. It is possible the answer to the lead question will cover

some of the follow up questions. Follow up questions can be used to gather more information if needed.

INITIAL QUESTIONS

Can you tell me how long your family received services from Noah’s Ark?

What was the reason for you exiting Noah’s Ark?

*If the reason was due to changing to another service provider/dissatisfaction see second set of questions


QUESTIONS FOR FAMILIES WHO ‘MOVED ON’ DUE TO AGE/INELIGIBILITY/SERVICES NO

LONGER REQUIRED

1. Experience of first visits with Noah’s Ark

WELCOME PHASE

Lead: Thinking back to your first visit with your Key Worker, how did you find that experience?

Follow up: Why did you choose Noah’s Ark as your service provider? What did you find useful about your first visits with Noah’s Ark? How well did you feel you understood the way Noah’s Ark works with families? What could have happened differently during your first visits with Noah’s Ark?

If you had to rate your experience of the first visit with your key worker on a scale of 1 – 10, with 1 being not very good and 10

being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10

2. Experience of having a Key Worker

Lead: What was your experience of having a Key Worker?

Follow up: What did you like about the way your key worker worked with you? What was the most helpful thing about having a key worker? What would you have liked your key worker to do differently?

If you had to rate your experience of working with a key worker on a scale of 1 – 10, with 1 being not very good and 10 being

really good, where would you put it?


1 2 3 4 5 6 7 8 9 10

3. Experience of developing goals and a plan for services EXPLORE

PHASE

Lead: If you think back to when you first started at Noah’s Ark and developed the goals with your key worker, how well did you feel the goals fitted with the things that were important for your family?

Follow up: How did the Key Worker learn about what was important for your child and family? How did you and your key worker develop the goals you wanted to work on? What was the experience of developing the goals like for you? Can you give me an example of some of the goals that were the most meaningful for you? What could have happened differently about the way the goals were developed?

If you had to rate your experience of developing goals with your key worker on a scale of 1 – 10, with 1 being not very good and

10 being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10

4. Experience of gathering information and assessment

INVESTIGATE PHASE

Lead: How did you and your key worker gather information and do assessments to know more about your child?

Follow up: Did the assessment and information gathering help you learn more about your child’s development? What was useful about the way your key worker gathered information? What could have happened differently around gathering information and assessment?

If you had to rate your experience of gathering information and doing assessment with your key worker on a scale of 1 – 10,

with 1 being not very good and 10 being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10


5. Experience of linking to supports and services – encouraging participation and inclusion

Lead: What was your experience of your key worker connecting you with other supports in your local area? This might have been something like going to childcare or joining in with a sports group.

Follow up: How did your key worker support you and your child to join in and be a part of those places? How did your key worker support your family to do things you wanted to do together? How well do you feel Noah’s Ark worked in partnership with other services? What could have happened differently?

If you had to rate your experience of your key worker connecting you with other supports and services on a scale of 1 – 10, with

1 being not very good and 10 being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10

6. Experience of deciding on or developing strategies to try

STRATEGY PHASE

Lead: How helpful was the Key worker in giving you useful information about how to help your child learn new skills?

Follow up: How did you decide on which strategies to try? Was there anything else that could have helped you in this process? What was useful about the way you and your key worker decided on strategies to try? What could have happened differently?

If you had to rate your experience of exploring strategies with your key worker on a scale of 1 – 10, with 1 being not very good

and 10 being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10


7. Effectiveness of intervention IMPLEMENT

PHASE

Lead: How effective do you feel the intervention provided by Noah’s Ark was for your family?

Follow up: How did you find the process of implementing strategies with your key worker? What helped you to use strategies between visits with your key worker? What aspect of intervention was most helpful? What was the most valuable thing you gained from being involved with Noah’s Ark? What could have happened differently to increase the effectiveness of intervention?

If you had to rate the effectiveness of intervention on a scale of 1 – 10, with 1 being not very effective and 10 being really

effective, where would you put it?

1 2 3 4 5 6 7 8 9 10

8. Experience of service delivery IMPLEMENT

PHASE

Lead: How helpful was the Key Worker in sharing ideas on how to help your child learn and participate through their daily activities?

Follow up: What were the places where your key worker visited you or your child? What did you find useful about that? What could have happened differently?

If you had to rate your experience of service delivery with your key worker on a scale of 1 – 10, with 1 being not very good and

10 being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10


9. Experience of the transdisciplinary team

IMPLEMENT PHASE

Lead: Did you ever have contact with other members of the team while working with Noah’s Ark? How did you find that experience?

Follow up: How did you and your key worker decide when and how other team members would be involved? How could this have been done differently?

If you had to rate your experience of working with other members of the team on a scale of 1 – 10, with 1 being not very good

and 10 being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10

10. Outcomes

EVALUATE PHASE

Lead: How helpful was Noah’s Ark in working with you to know when your child is making progress?

Follow up: What worked well? How could this have been done differently?

If you had to rate your experience of evaluating progress on a scale of 1 – 10, with 1 being not very good and 10 being really

good, where would you put it?

1 2 3 4 5 6 7 8 9 10


11. Support in preparing for the future MOVING

ON PHASE

Lead: a. How did your key worker help you prepare for leaving Noah’s Ark? b. If you kept receiving service from Noah’s Ark when your child was at school, what would be most helpful?

Follow up: How well do you feel that Noah’s Ark helped you to plan ahead for the future? What could have happened differently? What strategies that you learnt while working with Noah’s Ark are you still using? How confident do you feel to talk about your child’s needs with other people?

If you had to rate your experience of support to prepare for the future on a scale of 1 – 10, with 1 being not very good and 10

being really good, where would you put it?

1 2 3 4 5 6 7 8 9 10

12. Rights and advocacy

Lead: How helpful was Noah’s Ark in giving you information about your rights related to your child’s needs?

Follow up: How helpful was Noah’s Ark in explaining your rights?

If you had to rate your experience of support with advocacy on a scale of 1 – 10, with 1 being not very good and 10 being really

good, where would you put it?

1 2 3 4 5 6 7 8 9 10


13. Overall satisfaction

Lead: What was most useful about the support you received from Noah’s Ark?

Follow up: How satisfied were you with the services you received from Noah’s Ark? Would you recommend Noah’s Ark to friends? Did the service that you received meet with your expectations? Did you ever feel dissatisfied with the support you received from Noah’s Ark? How did you go about raising these concerns? What was the outcome? What could have happened differently about the way services were provided to improve your overall satisfaction?

If you had to rate your overall satisfaction on a scale of 1 – 10, with 1 being not very good and 10 being really good, where

would you put it?

1 2 3 4 5 6 7 8 9 10


INTERVIEW 2

Thinking back to when you first started, why did you choose Noah’s Ark as your service provider?

How did what was provided by Noah’s Ark match with your expectations?

What were your reasons for leaving Noah’s Ark?

Was there anything you liked about Noah’s Ark?

What was your experience of having a key worker?

What could we have done differently?

When you weren’t happy with our service how did you go about raising those concerns? What was the outcome?

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