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NHAN Program Evaluation 2011


Table of Contents Introduction

4

Objectives

5

What Parents Said...

6

Parents’ General Comments

12

What Service Providers Said...

14

What External Contractors Said... 19 NHAN Evaluation: Discussion

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Introduction In British Columbia, Regional Health Authorities in partnership with the Provincial Health Services Authority have created Assessment Networks to provide multi-disciplinary assessment services for children and youth (0-19 years). Children who may have Autism Spectrum Disorder and/or other Complex Developmental Behaviour Conditions (CDBC) are assessed through one of the provincial assessment networks. In Northern B.C., the Northern Health Assessment Network (NHAN) has been in place for seven years serving families north of Williams Lake, as far west as the Queen Charlotte Islands and east to Fort St John (see map page 5). In 2004, the NHAN started offering assessments for Autism. In 2006, the NHAN was able to add the CDBC program to the Northern B.C. teams. Since the introduction of NHAN, over 900 children have been referred to the Autism teams and over 1000 to the CDBC teams.

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Objectives The purpose of this project was to determine how and if the assessments done by the Northern Health Assessment Network benefit the children and families it serves. The NHAN evaluated the overall program by looking at both the Autism and CDBC programs. The two major objectives of this evaluation were: (1)To identify any differences between the Autism and CDBC programs. (2)To capture the perspectives of:

(a)

parents of children assessed by NHAN, service providers

(b) local working with children assessed by NHAN (such as counsellors, school aids, or daycare workers working in the local communities), and

external contractors

(c) who perform assessments for NHAN (such as paediatricians, psychologists, speech & language pathologists, and/or occupational therapists).

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What Parents Said... NHAN mailed questionnaires to every family who had a child assessed and had a mailing address on file. NHAN received 229 completed questionnaires back, with a response rate of 37%, and 130 surveys were returned as the family could not be contacted. The following summary outlines the findings from the 229 parent questionnaires.

1. In what city/town did you access NHAN service? Quesnel Prince George Burns Lake Smithers Terrace Prince Rupert Dawson Creek Fort St. John

8.6% 56.6% 4.1% 5.0% 6.3% 3.2% 5.4% 10.9%

2. What team was your child assessed by? Autism Team CDBC Team

11.8%

8.8%

29.8%

Not sure/don’t remember

49.6%

Both

3.Thinking back to when you got a referral from your family doctor, what happened? 75%

of people had no problems getting a referral/ it was easy.

“It took a while to pull all the pieces together but, once all in order, it was scheduled quickly with a contact person keeping us updated on progress. Very well done with valuable information provided.” 6

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“The meeting with the team wa were made very clear. My kids a and we learned lots from the tea


as very informative. The points and I really enjoyed the meeting am�.

4. How long did it take to get a referral to the program? Less than 1 month

14.4% 18%

1-3 months

24.3%

19.8%

4-8 months

23.4%

Longer than 8 months Not sure/ I don’t remember

5. After you got the referral to NHAN, what happened? (Check all that apply)

a 55.8% the wait for my child to be tested at the clinic was reasonable. 24.1% had no problem getting an assessment/it was easy 5.8% it was hard to get an assessment because of where I live 3.6% had trouble finding assessment services. 3.6% not sure or do not remember

6. How old was your child at the time of the assessment?

0-6 years old 6-19 years old

30.8%

68.3%

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7. The people (the team or the doctor) who did the assessment were: (Check all that apply)

a Knowledgable

Cooperative Easy to understand Efficient Family Centred Not sure/don’t remember

78.9%

74.4% 72.6% 70.4% 59.2% 2.7%

“My son and I had a very positive experience with the assessments provided by NHAN. The professionals involved in this process were all knowledgeable and helpful. As a result of the assessment, my son received the help he needed to become a full functioning kid. Today, (he) has developed positive peer relationships and he is succeeding in his education to the point of being on the Honour Roll…”

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8. Please show how much you agree or disagree with the following statements: Strongly Agree

Agree

Undecided

Disagree

Strongly Disagree

My child was treated well during the assessments.

57.1% (129)

41.2% (93)

1.8% (4)

0.0% (0)

0.0% (0)

My family was treated with respect during the assessment process.

57.3% (129)

39.1% (88)

2.2% (5)

1.3% (3)

0.0% (0)

The results of the assessment and the diagnosis were explained to me clearly.

45.8% (104)

44.9% (102)

5.3% (12)

4.0% (9)

0.0% (0)

The information provided in the assessment report was clear and easy to understand.

37.0% (84)

49.3% (112)

8.4% (19)

5.3% (12)

0.0% (0)

The NHAN workers made helpful recommendations for our family

26.0% (58)

49.3% (110)

17.0% (38)

6.3% (14)

1.3% (3)

I understand my child’s issues better because of the assessment.

32.2% (73)

44.1% (100)

16.7% (38)

4.0% (9)

3.1% (7)

After getting an assessment through NHAN, I get more help from my school and/ or daycare program.

24.5% (54)

38.6% (85)

15.0% (33)

15.0% (33)

6.8% (15)

Overall, I feel satisfied with the services provided by NHAN

35.1% (79)

50.2% (113)

8.4% (19)

3.6% (8)

2.7% (6)

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9.What were the greatest challenges when following up on the team recommendations? (Check all that apply)

a 29.4% the process took a long time

22.5% local programs did not have what was needed 22.5% had no problems 21.6% had troubles finding a support person to help them with recommendations 17.6% had trouble getting school funding 17.2% had problems getting support from schools

10.After the family conference with the assessment team, who were your biggest sources of support in getting into the right services? (Check all that apply) 11.5% 13.4% 13.8% 20.3% 29.5%

30.9%

Our family has had no Not applicable/ I

support from anyone

don’t remember

Family/friend Family doctor r CDBC Key Worke

are worker School or dayc

39.6%

e provider Other servic

11.Did NHAN provide you that you could not find el

10

5

0

Yes

“We thoroughly enjoyed working with NHAN, even though they were unable to provide a diagnosis. Thank you so very much for all of the wonderful help!”

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No Not sure/ I don’t remember


ur family with information lsewhere?

a 51.7% Expand services to help families who did not have an autism diagnosis to find help getting further assessments and programs

25.1% 31.5%

12.How can we improve this experience for other families? (Check all that apply)

43.4%

48.8% 28.6% 27.6% 22.7% 8.9%

Provide a follow-up visit after the diagnosis Provide childcare during appointments Increase awareness about Autism in children Provide help with travel (ie. like childcare costs) It was easy and does not need improvement

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Parents’ General Comments

APPRECIATION

STAY CONNECTED

The comments given by parents generally highlighted their satisfaction with NHAN services. Many parents took the opportunity to say “Thank you” to NHAN for providing the service.

Other parents suggested NHAN could help keep parents connected after the assessment was finished. NHAN could keep families updated with “information and newsletters” about new interventions, services, relevant websites, information on funding and presentations that may be going on in the region.

FOLLOW UP The major theme that emerged from the general comments was that parents want NHAN to extend their services beyond the assessment. Many parents wanted NHAN to help them understand what their next steps should be, where they can find services and resources, and how they can accces them. “Offer a follow-up visit with the initial team” or “Have a team that helps families get the therapy program up and running”.

LOCAL Other parents noted difficulties following NHAN recommendations because the recommendations were based on “big city” therapy. Many parents suggested that the NHAN final report would be greatly improved if it included an updated list of local services and resources available in their region. NHAN has since

created a list of local services for families.

Parents often described themselves as advocates for their children and doing a lot of their own research to get their children the support they need. “The key factor is that we (the parents) have to be pro-active, must investigate and pursue options”. Several parents suggested NHAN facilitate a support group for parents of children with a diagnosis and without a diagnosis. Many parents whose child did not receive a diagnosis felt they had no help post-assessment and a support group may help them cope with some of the difficulties.

“The assessment and the assessment process were both clear and straight forward. I encountered issues afterwards, trying to find the right people/places to get access to programs and funding”. A couple of parents suggested NHAN give parents “who live in remote communities” some introductory training on how to deal with their child’s diagnoses. Helping them stay connected and offering them further information on how to help their child overcome challenges would make them feel more supported in following up with NHAN recommendations.

DIFFERENCES BETWEEN THE 0-6 YEAR OLDS AND 6-19 YEAR OLD AGE GROUPS Parents of school-aged children had difficulty finding referral services and it generally took them longer to get a referral when compared to the parents of younger children. Fewer parents found the assessment helped get their children into more services or found NHAN recommendations helpful if their children were of school age. A small number of parents of preschool children were worried that they would lose funding or have less access to services once their child went to school. These findings suggest that preschool programs 12

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or early learning services may provide more support for families than schools working with 6-19 year olds.

GET SCHOOLS ON BOARD A number of parents of school-aged children suggested that getting a positive diagnosis for their child helped them get financial support and access to school services. However, some parents described difficulties getting the teachers and teaching assistants “on board” to follow through with the NHAN recommendations. Many parents suggested that the school employees were not prepared to deal with the diagnoses. Parents recommended NHAN help train School District employees on how to deal with Autism and CDBC diagnoses. Other recommendations that came from parents of children assessed by the Autism teams included getting NHAN to communicate with school employees and potentially have local service providers invited to the family conference to help develop aftercare plans. “I think that they should have invited my sons’ counsellor to the family conference, as I was completely overwhelmed with all the information that they told me”. This was not the case for parents

of children assessed by CDBC teams. All parents are welcome to invite local service providers and school employees to the family conference, but parents of children assessed by Autism teams may not be aware of this opportunity because they do not have access to a key worker. Key workers act as an advocate for parents within the CDBC programs and work to connect the NHAN team with local resources. Getting schools more involved in the assessment process and raising awareness about the services NHAN provides would support families during the assessment. Raising awareness about Autism and CDBCs, as well as offering training on how to deal with such diagnoses would help families follow through on NHAN recommendations.

OVERALL Overall, the comments given by parents highlighted how thankful families were to have access to NHAN assessment teams. Parents were happy to give their comments and recommendations. Parents generally appreciated the NHAN services and wanted to extend the existing network to include post assessment support.

“The team was very helpful during a difficult time”.

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What Service Providers Said... NHAN wants to know if the assessments they do make a difference in the communities they serve. Service providers such as counsellors, school aids, and daycare workers who work in Northern B.C. were asked to answer an online questionnaire about the children they work with who have been assessed by NHAN. The following section summarizes the findings from the 53 service provider questionnaires.

1. What community do you serve or is closest to the community you serve? Quesnel

5.7%

Prince George

28.3%

Burns Lake Smithers Terrace Prince Rupert Dawson Creek Fort St. John

0.0% 9.4% 17.0% 22.6% 5.7% 15.1%

2. The children you work with have received assessments from which of the following NHAN teams?

Autism Team

50.9%

Not sure/ I don’t Remember

Both

3.8%

“Assessments are done closer to home.” 3. How old are the children you work with?

0-6 years old only 6-19 years old only Both groups (0-6 & 6-19 years old)

58.5%

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NHAN Program Evaluation 2011

15.1%

17%

CDBC Team

28.3%


4. NHAN provides your community with both referral and assessment services for Autism and CDBC. Please take a moment to think about the children you serve who have accessed these services and state how much you agree or disagree with the following statements: Strongly Agree

Agree

Undecided

Disagree

Strongly Disagree

N/A

Getting a referral to the NHAN is clear and easy to understand.

15.4% (8)

40.4% (21)

19.2% (10)

23.1% (12)

0.0% (0)

1.9% (1)

The assessment process that the children and their families go through is accessible and easy to understand.

9.4% (5)

28.3% (15)

32.1% (17)

18.9% (10)

9.4% (5)

1.9% (1)

The information provided in the assessment report is clear and easy to understand

23.1% (12)

61.5% (32)

9.6% (5)

0.0% (0)

3.8% (2)

1.9% (1)

After receiving assessments through NHAN, I am better able to understand and respond to the needs of the children I serve.

30.8% (16)

48.1% (25)

7.7% (4)

7.7% (4)

3.8% (2)

1.9% (1)

After receiving assessment through NHAN, the children that I serve are better able to access extra support from community programs and schools.

23.1% (12)

44.2% (23)

15.4% (8)

15.4% (8)

0.0% (0)

1.9% (1)

Overall, I feel satisfied with the services provided by NHAN.

19.2% (10)

51.9% (27)

13.5% (7)

3.8% (2)

9.6% (5)

1.9% (1)

It was easy for me to follow through on recommendations that were made by the assessment(s).

9.8% (5)

58.8% (30)

9.8% (5)

9.8% (5)

5.9% (3)

5.9% (3)

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5. What were the greatest challenges in following up with the team recommendations? Over half of the respondents suggested the processes were often too long and wait times would get in the way of following up. Almost half of respondents also noted trouble getting funding for the services recommended by the team. Many service providers stated that they did not have the time to follow-up on recommendations. Nearly 50% of respondents suggested NHAN recommendations often included services that were not available locally. “We don’t have a local paediatrician”. A few service providers suggested NHAN provide a “service identification” portion to their reports that directed parents to regional and local services. A resource list has since been developed to accompany the NHAN recommendations. Another concern was continuity of care for children and families after the assessment. They expressed concern for families who were ���on their own” finding interventions and services. Someone to help parents navigate the system would be beneficial. This was more of a concern for parents of children assessed by Autism teams because they do not have assigned key workers.

6. Is there anything that NHAN can do to better support your community? Increasing awareness was the major theme when service providers were asked what NHAN can do to better support communities. Increasing awareness was suggested in three sub themes:

(1) Increase Community Awareness Service providers suggested that NHAN could provide “information to schools, families, and the general community on the process of having a child assessed”. Another few service providers specifically asked NHAN to “educate teachers on the process” and one person proposed a “district partner who liaises with the NHAN Coordinator”. A few of the respondents highlighted the difficulties they had with the lack of awareness in their communities in regards to Autism and CDBC and “getting the teachers on board”. They suggested NHAN “be more visible and accessible”.

(2) Increase Service Provider Awareness In some smaller communities, service providers advised they would like to be more involved in the assessment process. One service provider explains, “there is little to no communication between the diagnostic team and the child’s service team”. A few service providers expressed their interest in knowing more about the process and asked NHAN to provide a “timeline” and “information in regards to the referral process and what to expect once the referral has been handed in”. Further, the service providers asked to have access to the reports and be part of any post assessment discussions. Currently, the NHAN policy is that families decide who has access to the reports and who is invited to the discussions. These findings suggest this policy needs to be better communicated with families.

(3) Increase NHAN Assessment Team Awareness The service providers recommended that NHAN assessment teams communicate with the children’s existing service team either before or after the assessment. Many service providers emphasized the importance and practicality of the information that could be provided by the people who work with the child on a daily basis. One participant explains, “Such key people are not brought into discussions following the assessment, which is unfortunate given the opportunity to be part of such a discussion could contribute greatly to the work being done with the child and family”. Families are welcome to invite service providers, but communicating this opportunity with families needs to be clear and providing a key worker to families assessed by Autism teams may help. 16

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7. How has the assessment process helped you in better understanding the needs of the child and developing/delivering services for the child? Service providers declared a number of ways that the NHAN assessment had helped them to better understand the needs of children and delivering services. Many highlighted how the recommendations made by the NHAN teams were helpful to their practice. The major theme was that the assessment process helped in developing and delivering services for children by giving them justification for further funding and increasing services. The service providers cited the multi-disciplinary team approach to the assessments and subsequent reporting were appreciated. Other service providers added how the assessments directly affected how they tailored their learning plans.

“The service has been essential in providing an integrated service plan for the youth. Even if a diagnosis does not generate more funding, the knowledge we have around the student is invaluable�.

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8. What changes have you observed in your practice since the introduction of the NHAN? (1) Increased Support for Children and Families Service providers described the increased support for children and families that they have observed in their own communities and the added support they give children as a result of the assessments. Service providers noted the increase in services available to families, the support from schools, and how the assessments have helped youth during the transition to adulthood because it allowed them access to services.

(2) Increased Collaboration within the Community Service providers described the growth in collaboration at the community level since the introduction of NHAN. One service provider notes, “It just keeps getting better as everyone works together to best support students”. Another service provider explains how she has observed a “positive relationship between the School District, community agencies, and Northern Health”.

(3) Increased Awareness of Autism and Complex Developmental Behavioural Conditions Service providers discussed the raise in community awareness and a clearer understanding of how to help children with special needs. One service provider suggested that the heightened awareness had appeared to increase early intervention at the community level.

“Many of the adults who work in our school have changed their attitudes towards students identified with some level of neural damage. Many are more accepting of the students’ abilities and disabilities”. (4) Increased Accessibility to Assessments Service providers highlighted how the introduction of NHAN has expanded the number of assessments that are available to the children/youth in their communities. Most of the respondents highlighted the positive impact of having more accessibility to assessments and expressed gratitude.

“I feel I have something positive to offer parents struggling with undiagnosed children with special needs. It gives them hope to know that there are services out there that can be accessed if the right assessment is done”.

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What External Contractors Said... NHAN contracts approximately 45 health care professionals to perform assessments in Northern B.C. The external contractors include paediatricians, psychologists, speech & language pathologists, occupational therapists and key workers. NHAN asked their external contractors to answer an online questionnaire. The following section summarizes findings from 27 external contractor questionnaires.

1. What community(ies) do you serve? Quesnel Prince George Burns Lake Smithers Terrace Prince Rupert Dawson Creek Fort St. John

11.1% 33.3% 18.5% 22.2% 29.6% 14.8% 14.8% 22.2%

2. What NHAN team do you work for? 11.1% Autism Team

18.5%

CDBC Team

70.4%

Both

3. How old are the children that you assess?

0-6 years old only 6-19 years old only Both groups (0-6 & 6-19 years old)

0%

14.8%

81.5%

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4. NHAN provides Northern B.C. with both referral and assessment services for Autism and CDBC. P agree or disagree with the following statements: Strongly Agree

Agree

Undecided

Disagree

Strongly Disagree

N/A

The NHAN has been beneficial to Northern BC families and communities.

59.3% (16)

37.0% (10)

3.7% (1)

0.0% (0)

0.0% (0)

0.0% (0)

I have the time I need to do the assessments for the NHAN.

18.5% (5)

25.9% (7)

11.1% (3)

7.4% (2)

29.6% (8)

7.4% (2)

I have the material resources to do the assessments for NHAN

26.9% (7)

50.0% (13)

7.7% (2)

7.7% (2)

3.8% (1)

3.8% (1)

It is easy for families to access NHAN through the referral process

3.7% (1)

33.3% (9)

25.9% (7)

29.6% (8)

0.0% (0)

7.4% (2)

The assessments (testing of the children) are performed within a reasonable time period once referrals are received by NHAN.

3.7% (1)

22.2% (6)

18.5% (5)

29.6% (8)

22.2% (6)

3.7% (1)

I have enough time to review the children’s files prior to assessment.

14.8% (4)

33.3% (9)

18.5% (5)

11.1% (3)

11.1% (3)

11.1% (3)

I have enough time to administer and score the necessary tests and write reports.

14.8% (4)

14.8% (4)

11.1% (3)

14.8% (4)

18.5% (5)

25.9% (7)

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Please take a moment to think about the children you have assessed and state how much you

Strongly Agree

Agree

Undecided

Disagree

Strongly Disagree

N/A

The diagnostic team works effectively during the synthesis meetings.

44.4% (12)

55.6% (15)

0.0% (0)

0.0% (0)

0.0% (0)

0.0% (0)

The meetings with families are effective in providing results and diagnoses, giving recommendations and answering families questions.

33.3% (9)

59.3% (16)

3.7% (1)

3.7% (1)

0.0% (0)

0.0% (0)

Reports are sent to families, referring sources and others within a reasonable time frame.

14.8% (4)

51.9% (14)

18.5% (5)

7.4% (2)

7.4% (2)

0.0% (0)

The key workers play a useful role in supporting the families during and after the NHAN assessment and diagnostic process (CDBC only).

63.0% (17)

18.5% (5)

3.7% (1)

0.0% (0)

0.0% (0)

14.8% (4)

Overall, I feel satisfied with the NHAN service

16.0% (4)

52.0% (13)

20.0% (5)

12.0% (3)

0.0% (0)

0.0% (0)

5. The two aspects of my work for the CDBC and/or Autism clinics that give me the most satisfaction are: The major theme was the ability to help children and families. The subthemes included: (1) The ability to give families recommendations and treatment options: “recommendations put into action” (2) The opportunity to increase support the family is receiving: “supporting children and families throughout the process” (3) Getting the community involved in supporting families: “engaging the community in creative solutions to gaps in services”

“ It is rewarding to be able to help families. ”

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6. How can NHAN assessment and diagnostic services be improved? The major theme for improvement was decreasing the wait times that are experienced by families. They suggested “better coordination and preplanning of synthesis and family feedback” and recruitment of health care professionals were key in creating a “full team for timeliness and coordination”. Another area for improvement included “funding for more comprehensive assessments” . Increasing the number of assessments, the time allotted for assessments and the ability to be more comprehensive were all highlighted as potential areas that would improve NHAN services. A few contractors talked about improving the screening process “so assessments aren’t duplicated”. One contractor suggested NHAN create a way for referrals to be cancelled or modified when a “child has changed, concerns diminished, or an assessment has been done elsewhere”. Other comments regarding potential improvements included (a) more supports for parents, (b) increasing the number of face-to-face meetings instead of using videoconferencing, and (c) ensuring the “recommendations are useful for these families”.

7. What can NHAN do to better support you personally in your work with this service? When NHAN contractors were asked how NHAN can better support them personally in their work, the major theme was to increase the amount of time they have been allotted to provide NHAN services. The need for increased time was illustrated by suggestions to increase the time for more professional development, debriefing within the diagnostic teams and networking within the diagnostic teams.

A few contractors highlighted how the sustainability of NHAN would in turn support them personally in their work. Sustainability in NHAN funding and sustainability of health care professionals working on the teams were both mentioned. They also requested continuous evaluation and reporting to improve NHAN services. Overall, the response from contractors suggests NHAN continue and expand existing services.

8. What changes have you observed, in the communities that you serve, since the introduction of NHAN? The major theme when contractors were asked about the changes they have observed was increased awareness of Autism and CDBC.

“I have seen an increased recognition of the value of assessment and diagnosis in families and schools, including children outside the mandate of NHAN”.

Contractors discussed how the growth in awareness within communities has had cascading effects. Many contractors described how the increased awareness in the school system has in turn helped school services understand the needs of these children, increased collaboration between schools and other community services, and allowed them to access resources for families. Several contractors highlighted how the increased awareness has in turn increased the number of referrals and the need for assessment in communities. 22

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“I personally see better collaboration between other community service providers that work with the same families; communication and sharing together�.

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NHAN EVALUATION: Discussion

The purpose of this project was to determine if the assessments done by NHAN benefit the children and families it serves. The NHAN evaluated the overall program by looking at both the Autism and CDBC programs. The following speaks to the two major goals of the project: (1) To identify any differences between the Autism and CDBC programs, and (2) To capture the perspectives of parents, service providers, and external contractors.

(1) Differences Between the Autism and CDBC Programs a. According to Parents SOURCES OF SUPPORT: There were a number of differences when comparing responses between parents of children assessed by the Autism teams and parents of children assessed by CDBC teams. According to the survey responses, the greatest difference was in who their sources of support were after the family conference. Nearly 27% of the families who worked with the Autism teams stated that they had no one to help with the recommendations and only 13% of the families who worked with the CDBC teams stated the same. CDBC parents described how supportive their key worker had been, while parents of children assessed by the Autism teams often expressed frustration dealing with the diagnosis alone or found local service providers to help them through the process. These findings suggest the key worker program has been beneficial in supporting parents through the assessment and post assessment. CDBC RESULTS

AUTISM RESULTS

CDBC key worker Family doctor School or daycare worker

Family friend Other service provider Our family had no support from anyone

57.6%

24.2%

13.6%

40.9%

27.3%

4.5%

14.0%

11.2%

25.2%

13.1%

47.7%

17.8%

LOCAL SERVICES: The parents of children assessed by the Autism teams were more likely to state that they had difficulties following up on NHAN recommendations and finding appropriate local services when compared to parents of children assessed by the CDBC teams. More parents who had children assessed by CDBC teams strongly agreed or agreed that the NHAN recommendations were helpful for their family when compared to parents of children assessed by the Autism teams. These findings suggest that recommendations given by the Autism teams may need to model the CDBC program integrate local services in their recommendations and that the key worker program fosters collaboration. FUNDING: When comparing the general comments between the parents who had children assessed by CDBC teams and parents of children assessed by Autism teams, both groups highlighted the need for more funding for resources in their communities. However, parents of children assessed by Autism teams outlined their frustration with the inability to spend funding they had been given. They had the money, but the services were not available. They wanted funding to help create local services instead of just individual funding. More 24

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of the parents of children assessed for Autism accessed their services in Prince George and indicated the need for support with travel expenses . These findings suggest that NHAN has to increase the number of Autism assessments that are done outside of Prince George and ensure the Autism teams model the CDBC program and recognize the limit to local services when giving recommendations for therapies.

b. According to Service Providers SOURCES OF SUPPORT: Many service providers who worked with children assessed by the Autism teams suggested that NHAN provide further support to communities by supporting a key worker for children assessed for Autism. LOCAL SERVICES: More service providers who worked with children assessed by the Autism teams described difficulties following up on the recommendations made by NHAN because of the lack of local services. Meanwhile, those service providers who work with the children assessed by the CDBC teams suggested that finding a local paediatrician and getting follow up assessments were major challenges in following up with the team recommendations. These findings suggest CDBC assessments are more locally integrated, but children assessed by the CDBC teams have less access to outside professional services in comparison to the children assessed by the Autism teams. FUNDING: Service providers who worked with children assessed by Autism teams described several benefits of the NHAN assessments. Service providers who worked with children assessed for Autism had less trouble getting funding for the children they worked with compared to the those working with children assessed for CDBC. The service providers who work with children assessed by the Autism teams highlighted the benefit of having the assessments when applying for funding and this was not mentioned by those serving children assessed by the CDBC teams.

c. According to External Contractors According to the external contractors who work with NHAN, there were a number of differences between the Autism and CDBC teams. The contractors who worked on the Autism teams found they had enough time to do the assessments for NHAN in comparison with those who worked on the CDBC teams. The CDBC teams expressed less satisfaction with the amount of material resources available to them and highlighted the difficulties experienced by families accessing NHAN through the referral process. The CDBC teams highlighted the need for more funding for staff recruitment, an increase in hours, and to give more support to families. These findings suggest the CDBC teams may need more resources when compared to the Autism teams. The CDBC contractors expressed how thankful they were to work in a multi-disciplinary team environment. Contractors described how working in a team environment supported their professional development because they are “working with [a] team and learning from each other”. They also highlighted how working with community service providers allowed them to “identify gaps in service” and the “opportunity to find creative solutions” to bridging those gaps. This finding highlights how NHAN is collaborating with local communities to support families. CDBC contractors were more inclined to highlight how happy they were to work with families. These findings suggest the CDBC contractors have more of an opportunity to get to know their families in comparison to those working on the Autism teams. The Autism teams stressed the need for improvements to the screening process, but generally they were satisfied with NHAN. Both Autism and CDBC contractors described the increased awareness of childhood developmental difficulties across the North. CDBC contractors discussed the many benefits of collaboration and teamwork across disciplines that have been created since the introduction of NHAN. This was not highlighted by the Autism teams. The contractors working on the CDBC teams also described the increase in school support for children and the amazing relationships that have been developed between schools and health care providers since the inception of NHAN. These findings further suggest CDBC teams are more locally integrated in comparison to the Autism teams, highlighting the need for key workers in both programs. However, these findings also showcase the benefits of the multi-disciplinary approach taken by NHAN and how this nurtures the team and community to support families.

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(2) Overall Perspective of Parents, Service Providers and External Contractors a. “Thank You” The overall evaluation suggests that parents, local service providers, and NHAN external contractors are generally satisfied with, and thankful for, both the Autism and CDBC programs. All three groups identified the benefits of having NHAN services available, although there were several suggestions made for potential improvements to the service. Understanding a child’s behavioural profile informs programming at home and at school. The assessment process helped in developing and delivering services for children and youth by giving them justification when advocating for funding and increasing services.

b. Increased Collaboration and Services Available in the Communities All three groups described increased collaboration between community services, schools and health care professionals at the local level. Service providers and external contractors both cited the multi-disciplinary team approach to the assessments and subsequent reporting were beneficial to both the children assessed and the people working with families. All groups reported community members coming together to help children succeed. Local service providers and contractors noted that since the introduction of NHAN they have observed a significant increase in the number of assessments done, the funding coming into communities and the number of local services available. Collaboration between NHAN and communities could be increased if NHAN teams used existing local service reports when doing their assessments and incorporated key workers into the Autism program to further facilitate collaboration between the assessment teams and local services.

c. Extend Network Respondents from each group suggest that NHAN needs to continue what they are doing and extend their services beyond the assessment to support families with treatment plans. Parents identified the benefits of offering a follow-up visit post assessment to help parents establish their treatment plans; identifying what their next steps should be based on existing supports and services. Parents suggested NHAN would be greatly improved if they could keep families updated post assessment using a newsletter including upcoming events and new information on Autism and CBDC. Parents asked that NHAN facilitate a support group or network to help parents assist one another post assessment.

d. Increased Partnership with Schools Since the introduction of NHAN, all three groups noticed health care professionals and community services coming together with schools to support children with special needs. Many service providers working in the School Districts said they would like to be more involved with the assessment process and to have access to the NHAN reports. Parents and service providers discussed having school employees included in the family conferences. Service providers ask NHAN to provide “information to schools, families, and the general community on the process of having a child assessed”. This may help school aids and teachers get “on board” when trying to follow through with recommendations made by NHAN.

e. Improve Wait Times Parents generally agreed the wait for the assessment was reasonable, although many parents, service providers and contractors noted the assessment process itself could be too long. Parents, service providers and 26

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contractors recommended NHAN help recruit more health care professionals to ensure full assessment teams. With full assessment teams, NHAN could increase the number of assessments in the region and allow more time per assessment. Improving the screening process to ensure assessments are not duplicated and creating a way to cancel or change referrals were also suggested to help improve wait times.

f. Increase Community Awareness All three groups noted an increase in community awareness about Autism and CDBC since the introduction of NHAN. Nonetheless, one of the major themes throughout the evaluation was that there is still a lack of understanding in communities in regards to Autism and CDBC. Respondents described school employees, family physicians and other service providers who did not understand these diagnoses. They noted that more awareness is needed in regards to the services that NHAN offers. They suggested NHAN “be more visible and accessible”. Marketing the services NHAN already provides will help increase community awareness and continue to support communities. Raising awareness and marketing NHAN services to service providers needs to be a priority.

“We had an excellent assessment and were very encouraged by the information given to us. The diagnosis allowed us to quickly find the help our son needed.”

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The Northern Health Assessment Network would like to thank the families, community service providers and NHAN contractors who provided their feedback on our services. The evaluation would not have been possible without the input and assistance of Chantelle Wilson, Candice Manahan, Natalie Abrahamson, Sandi Wittmeier, Kathi Hughes, and Dr. Carol Oosthuizen. Northern Health is aknowledged for the provision of funding that made this evaluation possible.

For more information, contact Chantelle Wilson MSc, NHAN Manager, chantelle.wilson@northernhealth.ca


NHAN ASSESSMENT