Communications and Marketing Coordinator. ... the effects of FASD on the caregivers themselves and the individuals they
FASD Network of Saskatchewan
Evaluation May 2017
Vadis Consulting Group Nadia Stadnyk MSW, RSW Diane Fletcher BA
[email protected]
Acknowledgements This evaluation would not have been possible without the support, consultation, and participation of the entire staff of the FASD Network and, in particular, Leslie Allen, past Executive Director; Andrea Kotlar-Livingston, past Support Services Manager and current Executive Director; and Nicole Batty, Communications and Marketing Coordinator. Most importantly, deep thanks are offered to all the individuals living with FASD, their caregivers, and community partners for their willingness to be interviewed and the graciousness that they extended in sharing their stories.
No part of this document may be reproduced in any form or by any means without the prior written permission of the authors,
[email protected].
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Abstract The FASD Network is a provincial, community-based, not-for-profit organization that has been in existence for 22 years. The mandate of the organization is to enhance the lives of individuals and families living with FASD. This evaluation sought to determine if the program areas of support services and training were achieving the identified outcomes of the FASD Network. Individuals living with FASD, caregivers and community partners were interviewed for this evaluation. A stakeholder analysis and logic model were completed. The stakeholder analysis helped identify the community partners to be interviewed and the logic model provided the framework for the evaluation by identifying the program and organizational outcomes. The short-term outcomes for support are centred on the individuals and caregivers being able to manage each day by incorporating effective strategies to lessen potential stressors in their lives. The intent is for individuals to feel successful, as defined by themselves. The short-term outcomes for caregivers is that they are able to manage well, take good care of themselves, and not be consumed by the effects of FASD on the caregivers themselves and the individuals they care for and care about. The long term outcomes of the program are increased awareness of the FASD Network, better ability to access disability informed services, decreased contact with intervention systems, and reduced stigma. This evaluation found that the short-term outcomes are being achieved and strides are being made towards the long-term outcomes.
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Operational Definitions Individuals:
An individual is a person who is living with or suspects they may live with FASD.
Caregiver:
A caregiver is a person who provides care for the individual. This could be a mother, father, adoptive parent, foster parent, sibling, aunt, uncle, etc.
Professional: An individual in an organization who makes referrals to the FASD Network, and/or are supporters and allies in the community.
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Table of Contents 1. 2. 3. 4.
Acknowledgements .................................................................................................................................. 1 Abstract .................................................................................................................................................... 2 Operational Definitions ............................................................................................................................ 3 Description of the FASD Network .......................................................................................................... 5-8 a. Mission, Vision, Mandate................................................................................................................. 5 b. History.............................................................................................................................................. 5 c. Definition of FASD............................................................................................................................ 6 d. FASD is a Lifelong Disability.............................................................................................................. 7 e. FASD is a Family and Community Issue............................................................................................ 7 f. Description of FASD Network Programs and Offerings.................................................................... 8
5. Purpose of the Evaluation ........................................................................................................................ 8 6. Methodology ............................................................................................................................................ 8 a. Participant Criteria........................................................................................................................... 9 b. Review of Logic Model and Outcomes of the Programs.................................................................. 9 7. Evaluation Findings . ............................................................................................................................... a. Individuals living with FASD............................................................................................................ b. Caregivers....................................................................................................................................... c. Funders.......................................................................................................................................... d. Professionals.................................................................................................................................. e. Training...........................................................................................................................................
10 10 12 14 15 18
8. Summary and Conclusion ....................................................................................................................... 22 9. References .............................................................................................................................................. 25 10. Appendix A ............................................................................................................................................. 26 11. Appendix B ............................................................................................................................................. 27 12. Appendix C ............................................................................................................................................. 28 13. Appendix D ............................................................................................................................................. 29 14. Appendix E . ............................................................................................................................................ 30 15. Appendix F . ............................................................................................................................................ 31 16. Appendix G ............................................................................................................................................. 32
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Description of the FASD Network The FASD Network is a provincial, community-based, not-for-profit organization that has been in existence for 22 years.
The FASD Network is a provincial, community-based, not-for-profit organization that has been in existence for 22 years. The Mission, Vision, and Mandate are as follows:
Mission • To enhance the lives of individuals and families living with FASD
Vision • For individuals with FASD and their families to recognize themselves as safe, supported, valued, and contributing members of the community
Mandate •
To provide supports and services to individuals and families living with FASD
•
To provide information, awareness, and education about FASD to individuals who may provide supports and services to those living with FASD
•
To work towards the development of life-long services and supports for individuals living with FASD
•
To promote prevention, early assessment, diagnosis, and intervention
•
To work in partnership with government, business, agencies, and the community as a whole in order to fulfill our mission
The FASD Network website was very useful in forming the narrative of some of the above and following sections - http://www.skfasnetwork.ca.
History Although the current Network may not be recognizable as the small group of parents who started in 1993, the values that guide this organization today originated from that first meeting.
In 1993, the Saskatchewan Institute on Prevention of Handicaps hosted a provincial symposium on Fetal Alcohol Syndrome in Saskatoon. A group of parents and caregivers of individuals with Fetal Alcohol Spectrum Disorder (FASD) connected at the symposium in recognition of the need for parent support. In the earliest days, the main priority of the Network was to produce a newsletter that could offer information and connect those affected by FASD and their caregivers, and the Network eventually evolved from there. A parent support group was formed and, although helpful, it soon became apparent that external support was necessary. There was an obvious absence of services and supports to individuals and families affected by FASD, so in 1995, the Saskatchewan Fetal Alcohol Support Network became incorporated. At that time, the group performed a needs assessment to identify common areas of concern and determine future direction of the Network. Although the current Network may not be recognizable as the small group of parents who started in 1993, the values that guide this organization today originated from that first meeting. The spirit and determination of those caregivers will 5
forever be the foundation of the Network. It was their vision and hard work that allowed the Network to support and educate many people through the years. Their unwillingness to let the lack of services continue, their endless volunteer hours, their relentless pursuit of funding, and their incredible ability to care for their own families while supporting others has led to over 20 years of success. Now, in 2017, FASD is more prominent in the minds of the public, and general awareness and understanding of the disability has increased throughout the province. The Network will continue to foster this growth through training and support. The staff and board at the Network are committed to fulfilling the vision laid out by the organization’s founders. They share the great privilege and responsibility of carrying this legacy into the next 20 years. (Adapted from the FASD Saskatchewan website and interviews) Fetal Alcohol Spectrum Disorder (FASD) is an important health issue in Canada.
“Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term used to describe the range of disabilities and diagnosis that result from drinking alcohol during pregnancy”
Definition of FASD Fetal Alcohol Spectrum Disorder (FASD) is an important health issue in Canada. The term Fetal Alcohol Spectrum Disorder is an umbrella term that describes a range of disabilities that can occur in infants, children, youth, or adults who were exposed to alcohol while in the womb (PHAC 2014). You might also hear phrases like prenatal exposure to alcohol, exposure to alcohol before birth, or hear FASD described as occurring when a mother drinks while pregnant. As a result of alcohol use during pregnancy, an infant can be born with permanent brain damage. The effects on individuals are lifelong and can result in a wide range of physical, psychological, behavioural, and social problems that affect the individuals, their families, and their communities. “Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term used to describe the range of disabilities and diagnosis that result from drinking alcohol during pregnancy” (PHAC 2014). When a woman drinks alcohol while pregnant, her fetus is exposed directly to alcohol through her bloodstream. Alcohol can interfere with growth and development of all fetal body systems. The developing brain and central nervous system (CNS) are especially at risk to the harms of alcohol. In addition, because the brain and CNS develop throughout the entire nine months of pregnancy, the harm can happen over an extended time. The following describe the current Canadian diagnostic terms and criteria within the span of FASD. •
FASD with sentinel facial findings
•
FASD without sentinel facial findings
•
At Risk for Neurodevelopmental disorder and FASD (included as a designation, not a diagnosis) 6
Health Agency of Canada suggests that 9 in 1000 births are affected by FASD.
These diagnoses include mild to severe disabilities. The disabilities can be a mix of cognitive (thinking), behavioural (actions), physical (body or health), or sensory (vision, touch, hearing) disabilities. Disabilities caused by direct exposure to alcohol in the womb are called primary disabilities. They are present from birth, permanent, and different for everyone. Secondary disabilities occur later in life as a result of the primary disabilities and are not present at birth. Since we cannot see the physical changes to the brain or the changes in brain functioning, FASD is called an invisible disability. Individuals often face struggles without knowing the cause of their challenges (PHAC 2010) (CAMH 2012). Health Agency of Canada suggests that 9 in 1000 births are affected by FASD. Another way to understand this is that up to 300,000 people are living with FASD in our country. However, since many individuals living with FASD don’t receive a diagnosis, these rates are thought to be underestimated (PHAC, 2014) (PHAC, 2010) (PHAC, 2005) (Health Canada, 2006).
FASD is a disability that lasts throughout an individual’s entire lifespan.
FASD is not just an individual experience; it is a human issue that impacts the lives of families and communities (PHAC, 2010).
FASD is a Lifelong Disability FASD is a disability that lasts throughout an individual’s entire lifespan. The primary disabilities linked with FASD are permanent, and the damage caused to the brain does not lessen or improve even as the person gets older. Secondary disabilities can increase the complexity of the disability. However, the behaviours of an individual with FASD may be positively impacted with support, effective strategies, and improved understanding.
FASD is a Family and Community Issue FASD is not just an individual experience; it is a human issue that impacts the lives of families and communities (PHAC, 2010). FASD not only influences the child, youth, or adult affected by exposure to alcohol in the womb; parents and caregivers, other family members, classmates, teachers, neighbours, coworkers, and the community as a whole are influenced as well. Since anyone in the community can in some way be touched by FASD, even when they don’t know it, increased awareness and understanding of FASD at a community level is critical. With knowledge, community members can make a positive difference to individuals and families living with FASD. Given the breadth and range of the disabilities of FASD, every family, whether birth, foster, adoptive, or extended will experience the effects of FASD in unique and specific ways. To be truly successful, all families need the understanding of others. Most will also need additional services from systems of social support and community organizations. For example, families benefit when they receive both formal and informal support through loss, grief, and/or disappointment. Siblings, grandparents, and extended family members may need help to understand FASD and understand how they can support each other.
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Description of FASD Network Programs and Offerings Using the headings from the website, the following captures the essence of the Network program and its offerings:
Vadis Consulting Group were initially contracted to conduct an evaluation of the FASD Network in the areas of support services, training, and communication.
Support Program:
Through one-to-one support, caregiver support meetings, peer support meetings, workshops, conferences, and printed and on-line resources the network gives individuals living with FASD direct support as well as as offering support for those caring for these individuals. Face-to-face support is offered within a 50 km radius of Saskatoon. In 2017, an outreach position was created to offer better support to families in Saskatchewan through the use of technology.
Training:
The Network conducts training extensively throughout the province. Five training modules include training for postsecondary students, current and prospective foster parents, as well as introductory and advanced training for frontline workers. The Network also makes presentations to diverse audiences in the community as requested.
Events:
Encompassing elements of support and training, the Network facilitates a variety of regularly occurring support meetings and events such as retreats, a summer barbeque, and conferences for parents and caregivers.
Resources:
Supplementing the areas of support and training, the Network offers a vast number of online and print resources and publications as well as links to other community resources. Print resources can be sent throughout Saskatchewan at no cost.
Purpose of the Evaluation Diane Fletcher and Nadia Stadnyk of Vadis Consulting Group were initially contracted to conduct an evaluation of the FASD Network in the areas of support services, training, and communication. After initial exploration, “communication” was removed from the contract as it is not a “service” of the organization, communication is a means to an end. It was also observed by the evaluators that the Network is already collecting and analyzing multiple data points in the area of communication, which forms the basis of their decisions to alter communication strategies as needed. A Logic Model was to be developed which would provide the framework for the evaluation. In the Logic Model the outcomes would be identified and the evaluation questions would be targeted to provide data that would speak to whether the outcomes are being achieved. A Letter of Agreement was developed and signed by both Vadis Consulting Group and the FASD Network.
Methodology The evaluators worked collectively with the FASD Network Executive Director and Support Program Manager who became the working group to develop the framework for a mixed-methods approach to gathering data which included both 8
The working group developed the evaluation questions, the criteria for participants, and the format for collecting the data.
quantitative (interviews) and qualitative (survey) methods. The working group developed the evaluation questions, the criteria for participants, and the format for collecting the data.
The criteria used to select participants was as follows: After completing a Stakeholder Analysis (Appendix A) with the staff, key community partners were identified. These were organizations that had made referrals, were part of the funding groups, and were supporters and allies in the community. A Logic Model (Appendix B) was also designed with the input of the working group. The Logic Model established the short-term and long-term outcomes for the three areas – support, training, and communication. The Logic Model helped identify the interview questions for the individuals living with FASD, caregivers of individuals living with FASD, professionals, and funders.
The Logic Model established the short-term and long-term outcomes for the three areas – support, training, and communication.
The method used to evaluate the FASD Network was a qualitative participatory evaluation process.
The method used to evaluate the FASD Network was a qualitative participatory evaluation process. The evaluators made every effort to obtain random samples. In order to obtain participants for the evaluation, different processes were used. For the individuals and caregivers the Network sent out an invitation to participate. A response was requested for those who agreed to be interviewed and were contacted by the evaluators. In order to achieve reliability and validity, more participants were recruited through the peer and caregiver support group meetings. In total, the evaluators were able to recruit six individuals living with FASD out of 56 Network contacts, and eight caregivers out of a potential 48. Twenty-five key community partners identified in the stakeholder analysis were contacted by the Network who informed them of the evaluation and the potential for them to be contacted for an interview. Of the 25 community partners contacted, 12 were interviewed by the evaluators for this evaluation. One of the first steps in the process was the development of the evaluation questions. The interview questions were semi-structured and open-ended. A pilot interview was conducted for each group to ensure that the questions were appropriate and intelligible for gathering information. The questions were based on collecting information that would indicate movement towards the achievement of the Network’s stated outcomes. Following the pilot, a question was added to the Caregiver Interview Guide to determine how they found out about the FASD Network. For the training component of the evaluation, a detailed analysis of all event posttraining evaluations conducted immediately after training events was conducted. For the purposes of this evaluation, a request to complete a post-training evaluation survey with a link to SurveyMonkey was included in one of the regular FASD Network monthly mass newsletter emails.
Review of the Logic Model and the Outcomes of the Program FASD Network’s mission is to enhance the lives of individuals and families affected by FASD. To achieve their mission, they work in three main areas: support, training, 9
The short-term outcomes for support are centred on the individuals and caregivers being able to manage each day, incorporating effective strategies to lessen the potential stressors in their lives.
The intent is for individuals to feel successful as defined by themselves.
and communication. They provide extensive support to individuals and caregivers living with FASD who can access their services voluntarily. They have an extensive training program for anyone who may have contact with those living with FASD, such as teachers, nurses, police, mental health workers, and professionals in related fields, such as child welfare. They have far-reaching systems of communicating with the community through newsletters, a journal, a book of stories, social media, awareness-raising campaigns, and fundraising events. The short-term outcomes for support are centred on the individuals and caregivers being able to manage each day, incorporating effective strategies to lessen the potential stressors in their lives. The intent is for individuals to feel successful as defined by themselves. As well, the intent for caregivers is that they are able to manage well, take good care of themselves, and not be consumed by the effects of FASD on themselves and the individuals they care for and care about. The short-term outcomes for training are to increase awareness, knowledge, understanding and competency of intervention systems such as health, education, social services, and justice when faced with the unique needs of individuals who live with FASD. The short-term outcome for the communication component is to increase the Network’s outreach, their capacity to deliver training, and their support to caregivers in the community.
The intent for caregivers is that they are able to manage well, take good care of themselves, and not be consumed by the effects of FASD on themselves and the individuals they care for and care about.
The long-term outcomes for the FASD Network are: • increased awareness of the FASD Network, • a time where individuals are better able to access disability informed services, • where there is evidence that there is a societal decreased need for contact with intervention systems such as justice and social services and, • reduced stigma towards those who live with the affects of FASD.
Evaluation Findings The purpose of the questions was to determine if they received support from the Network; how they felt about the Network; was the Network helpful; how the Network had influenced their lives; and how they had learned about the Network.
Individuals living with FASD The individuals interviewed were asked seven questions (Appendix C). The purpose of the questions was to determine if they received support from the Network; how they felt about the Network; was the Network helpful; how the Network had influenced their lives; and how they had learned about the Network. When asked about the FASD Network, all the individuals described it as helping people with FASD. They knew the Network provided support, peer group meetings, and information about FASD. How individuals heard about and came to utilize the services provided by the Network was varied and from a wide range of sources such as counsellors, family members, social workers, employment counsellors, educational assistants, and 10
The individuals utilize the services according to their needs
One individual stated, “I really felt heard – one of the big differences from working with past places, which in turn made me want to continue to support the Network.”
All the participants attributed the Network as having a positive effect on their lives.
The final comments of several of the interviewees were “They are amazing. They help a lot of family and friends I know that have tough times.”
social media. The referral sources represent a wide cross-section of people that know about the Network. The individuals utilize the services according to their needs, such as meeting with their support person on a regular basis, in times of crisis for a variety of individual needs, and/or attending peer-support meetings and special events organized by the Network. Several individuals talked about how the Network had set them up with a mentor whom they met with on a regular basis. One participant stated, “My mentor helping me mostly with budgeting, taking me to budgeting classes and she’s help me with my anxiety.” Participants reported the length of time they had been involved in the services offered by the Network varied from several months to over 5 years. For evaluative purposes, there is adequate representation of the individuals with their varied experiences and length of involvement with the Network. All the participants talked about feeling supported by the Network. Their predominate feeling was “good” when they were asked how they felt about being involved and participating with the Network. One individual stated, “I really felt heard – one of the big differences from working with past places, which in turn made me want to continue to support the Network.” Another individual stated, “When I get a chance to talk I feel like my story’s been heard, helped me not feel alone.” Another interviewee stated, “It’s kind of a relief knowing there are other people out there going through this or who have gone through this.” One individual did remark that during the peer meeting, “They’ve given us full rein for the conversation and they need to give more support, just give us ideas for not being negative.” All the participants attributed the Network as having a positive effect on their lives. Here are some of the comments from the individuals interviewed:
“Network has listened not judged regardless of what goals I’ve set.”
“Help me with scheduling and tasks I have trouble with like getting up in the morning, remembering my keys.”
“They support me and give me tips for how to get out of tough situations.”
“Got me a work placement, helped me with my resume. Helped me better than other things.”
“They make me a chart to help remember to take my medication.”
“They really take the time to listen and understand what the individual is saying and what they think they need.”
“Definitely helped me get a clear picture of what I live with and how to cope with it.”
All the participants were asked if there was anything else they would like to report about the FASD Network. One participant was grateful for the many politicians who were working at making things better for individuals with FASD such as Danielle Chartier, MLA, and Sheri Benson, MP. She also mentioned there is work being done to change the criminal code Bill C235 so individuals with FASD have a private cell if they are incarcerated. The final comments of several of the interviewees were “They are amazing. They help a lot of family and friends I know that have tough times.” 11
The individuals who were interviewed reported feeling supported and cared for by the Network. They gave examples of what services were provided by the Network to help them get through life. On a final note, as one interviewee stated, “Anyway I look at the Network I see support.”
Caregivers The caregivers interviewed were asked ten questions (Appendix D). The purpose of the questions was to: gain an understanding about their involvement with the Network; the benefits they received from the Network; did they experience any barriers that prevented them from participating in the Network; have the individuals they have cared for been helped because of the Network; if they saw a change in attitudes in service delivery systems towards individuals living with FASD; and any suggestions they might have for the Network moving forward.
One caregiver stated, “They helped us advocate with our school team, gave us jargon to use with the principal, and they offered to come in and advocate with us if needed.”
One caregiver stated, “He’s more confident, definitely more successful when we’re more balanced, understanding his behaviour, and over time as we learn how to do this. Our parenting is better because we have tools that fit his disability and because of that he’s more successful so more confident.”
Network involvement of the caregivers who were interviewed varied from inception of the organization to the last couple of years. The caregivers learned about the Network from sources such as a Google search on FAS (Fetal Alcohol Syndrome) and Saskatoon, PRIDE training for foster and adoptive families, and looking for support in parenting children with disabilities. The Network was identified by the caregivers as a very valuable resource, specifically naming elements such as events and written material including brochures and booklets. The service was useful to caregivers whether the individual they were caring for was 2 years of age or 42 years of age. The caregivers talked about attending many Network-sponsored activities such as retreats, caregiver support groups, meetings, barbeques, workshops, conferences, and training events. The Network provided them with many resources including advice on how to advocate for their child. One caregiver stated, “They helped us advocate with our school team, gave us jargon to use with the principal, and they offered to come in and advocate with us if needed.” Another caregiver described an example of a typical caregiver meeting where a caregiver would be sharing about a struggle or unpleasant event that may have occurred with their individual, and another caregiver would follow up with a joke about something similar that they experienced; they would all burst out laughing and the comment was, “Only in this group of people could we make a joke about this and everybody gets it and that in itself is invaluable.” An important outcome for the Network is for the individuals to feel more confident and successful in their lives. In order to assess if this outcome has been achieved, we asked the caregivers to speak to whether they felt their individual was successful and a contributing member of the community. One caregiver stated that it was too soon to speak to this outcome as their individual was very young. Another caregiver stated that their individual has returned home after being away a long time and was struggling at the moment with emotions and physical health. The remainder of the caregivers all felt their individual was more successful and a contributing member of society because of their involvement with FASD. One caregiver stated, “He’s more confident, definitely more successful when we’re more balanced, understanding his behaviour, and over time as we learn how to do this. Our parenting is better because we have tools that fit his disability and because of that he’s more successful so more confident.” Another caregiver stated, “You totally change your idea of what is, what success means.” They went on to talk about their son who has held down the same job for many years. He still has issues with money management, but he is in a stable 12
One event that did stand out for one family was the barbeque where several police members attended and mingled with the families.
There seemed to be few barriers that prevented parents from participating in the activities and events hosted by the FASD Network.
Another item the caregivers identified as important to them related to their individuals as they age.
One caregiver stated, “I know when she was in school we would have appreciated if the teachers and other students were more aware of FASD like she was not understood and she experienced a lot of bullying because people did not understand her disability.”
living situation and he is managing very well. Another caregiver stated, “I think he is more successful and I can see that he’s going to be more successful because of the interventions that are there to help him.” The Network puts on many different activities as well as providing support, training, and education. The caregivers were asked what activities they attended. Many of the caregivers have attended several of the activities such as retreats, barbeques, workshops, and training events, and all of them have attended the caregiver support groups. One event that did stand out for one family was the barbeque where several police members attended and mingled with the families. One caregiver talked about her son being a runner. If at some point he would run away she could call the police and let them know if they pick him up that this is what he does due to poor impulse control. Meeting the police would help the kids understand they could go to the police and get help. The individual would see the police as safe and the police would have a record of her son and understand that he has FASD and is not just trying to run away. There seemed to be few barriers that prevented parents from participating in the activities and events hosted by the FASD Network. Sometimes the events are mainly focused for older people and the younger individuals are not able to attend. Sometimes some events are held during the day and are difficult for those working to attend. Child care can be an issue for retreats; however, it becomes too complex and the liability is an issue, so caregivers are left to find their own childcare. When the caregivers were asked what other services they would find helpful, several answered that it would be helpful to have a centre such as Autism Services has, where they help children from toileting to school readiness. Autism Services was also referenced as having in-home support programs that work with families to find different tools and tweak their home to be better. It became evident that many of the caregivers recognized that FASD does not get the funding and resources that Autism does in the community. A respite registry for workers who could care for their individuals would also be very helpful. It was suggested it would be important to expand this service across the province. Another item the caregivers identified as important to them related to their individuals as they age. It was identified that it would be more appropriate for the government to change the function assessment to not be just IQ based. This would be so that, as their individuals move into adulthood, those individuals with a higher IQ but lower functioning could benefit from their services. Unfortunately, this has been requested for many years and the caregivers did not feel hopeful that this would happen. One other request and suggestion is for the Network to bring in guest speakers such as a lawyer to speak on Power of Attorney, a social worker to explain Income Assistance, and someone to speak about how to claim an adult dependant on your income tax. The caregivers were asked if they have seen a shift in attitude, openness, and better service over the last few years. The caregivers that have been caring for individuals for many years certainly have seen a change in resources for FASD and overall better services and understanding. One caregiver stated, “I know when she was in school we would have appreciated if the teachers and other students were more aware of FASD like she was not understood and she experienced a lot of bullying because people did not understand her disability.” Another commented, “When you stop and read in the Star Phoenix and the police have somebody in custody or something well they check out they think maybe they have FASD so they are dealing 13
As one caregiver stated, “People need to recognize that it is a disability and not accuse her of being defiant.”
differently which is very helpful.” One caregiver expressed concern that there are still some mixed messages being sent by healthcare professionals about drinking during pregnancy so there still needs to be ongoing continuing education about the effects of drinking when pregnant and about FASD and the effects on individuals. From several experiences it was observed there are still professionals they have accessed who do not understand FASD, so there needs to be ongoing education to help people become more informed. As one caregiver stated, “There is always room for improvement. People need to recognize that it is a disability and not accuse her of being defiant.” Some have seen family members “…become more understanding as they have learned, FASD kids are seen as not having a conscience or should and now people like my mom understand it is about over-stimulation and impulsivity and regulation.” The caregivers were asked if there was anything else that they would like to say about their experience with the Network. The majority of the comments were praising the staff at the FASD Network. Below are some of their comments:
Raising awareness is still important as there are still professionals who do not understand FASD.
“I’ve been very impressed the people that I’ve had contact with are open and very warm and caring and non-judgemental and yeah I think they’ve got an excellent group of employees.”
“I don’t think it’s all on their shoulders (Network) to be I don’t think they are hundred percent responsible for the level of awareness that’s out there because we are all responsible.”
“They have been such a positive support for our family in terms of tools and other programs to access.”
“Feel they’re quite industrious as a team to help us succeed as a family.”
Many of the caregivers interviewed have been involved for many years with the Network. They have seen society change throughout those years; individuals with FASD have much more community support now, and they see that there is more awareness by service delivery systems. Raising awareness is still important as there are still professionals who do not understand FASD. There was some identification by the caregivers that Autism Services does seem to have more resources to support families than the FASD Network. The caregivers are very grateful for all the services and support that they can access from the Network, and they do recognize the hard work and caring the staff provide. For people to be able to gain support for over 22 years from the Network says a lot about the wide array of services they provide and the care and support they offer. The Network has certainly stood the test of time by growing and evolving through the years and adapting to the needs of the people they serve. This certainly speaks to the strength and resiliency of the organization.
Funders The FASD Network has several funding sources. The evaluators were able to have two funding groups agree to be interviewed for the purpose of this evaluation. One funder funds the Network due to their budget and mandate for the responsible use of alcohol, and another funder funds them for working with identified families. The Funders were asked a total of six questions (Appendix E). The questions were designed to gain information about what they fund the Network for, and have 14
Funders reported that the Network was meeting their objectives.
“They are meeting a gap in service that is specific to a targeted population otherwise funnelled to a generic family service program that doesn’t have the necessary skills, knowledge, and training.”
The Network is seen as outlining everything in their proposals and reports answering all their questions in a way that satisfies them.
they seen any evidence of the benefit to individuals living with FASD, caregivers, professionals, and the service delivery systems. The other important question asked was to what extent the Network was meeting their objectives as funders, and finally, if they had seen any shifts in societal perceptions of individuals living with FASD. A challenge one funder struggles with is the actual impact of, ‘becoming more aware’ of FASD and ‘reducing the dangers around drinking while pregnant’. This funder, through their own research and experience with the information and studies regarding FASD, has deduced that awareness does lead to better outcomes for children. For children who already live with the effects of FASD, the Network is reported to educate parents so they can parent according to the needs of their child. By the Network training parents, foster parents, and community members, they have reduced the incidence of children and parents needing to come into contact with the child welfare system. One impact of parents being able to parent their children is the huge cost savings for service delivery systems, subsequently reducing societal costs. Funders reported that the Network was meeting their objectives. One response was: “They are meeting a gap in service that is specific to a targeted population otherwise funnelled to a generic family service program that doesn’t have the necessary skills, knowledge, and training.” The Network is seen as outlining everything in their proposals and reports answering all their questions in a way that satisfies them. The evaluator did ask if the funders were able to see a shift in society and systems on their perceptions of people living with FASD. One funder stated that it is a lifelong journey of education and support to do that. The other funder stated that there were shifts, as FASD used to be considered prevalent around mostly lower socio-economic groups, and now society is seeing that that’s not necessarily the case. FASD occurs in all economic groups. It was also identified that, from paying attention to what is occurring in the community, it is evident that the court system is knowledgeable about FASD. The funders were asked if there was anything that they wanted to tell the Network. One funder suggested that, in considering their strategic direction the Network may want to move to be more direct service and be clearer about what it is they want to be defined as. The other funder was wondering about the legislation and whether that would help society become more aware about the harms and costs around the issue of FASD, but they deduced that the public is less tolerant of government regulation and costs associated with such regulations. Neither funder has any concerns about reporting done by the Network or the work they are performing. Overall, funders appear to be pleased with the work that the Network is engaged in and believe that their work is making a difference to achieve better outcomes for children, parents, and society at large.
Professionals Nine professionals from various agencies and government departments were interviewed. The eight questions (Appendix F) they were asked centred on: the benefits of the Network; did they experience increased competency as a result of the Network; was their service delivery system adapting to the needs of the system; 15
and had they seen change in society’s perception of people living with FASD. Some of the professionals worked closely with the Network, some served on committees with the Network , some complemented each others’ services, and some had received training from the Network as part of their work.
All of the professionals refer clients to the Network as needed.
The professionals’ involvement with the Network was varied. Some of the professionals worked closely with the Network, some served on committees with the Network , some complemented each others’ services, and some had received training from the Network as part of their work. All of the professionals refer clients to the Network as needed. Training for families and for professionals, providing information, providing support to families and individuals, and advocacy was what the interviewees referred to as being the most beneficial services that the Network offers in the community. After attending workshops and learning about the stigma of FASD, attendees learned to let go of the stigma and perceptions, thereby helping to change societal attitudes and consequently helping children who have been in foster care to achieve permanency and belonging to a family. The training has also helped the police be more knowledgeable about how to engage with an individual living with FASD when they get involved with the law. Here are some comments from professionals interviewed:
“They’re (staff of the FASD Network) always willing if they don’t have the information to find the information so that’s a bonus so I know if we needed anything we could call them and they would be able to direct us.”
“We have mom ….who’s housed, who has been so well assisted by the family outreach person from the Network that if I drop in to see her, she’s you know just the little labels the sticky notes to remember to remind her how to when to do things during the day just like her whole schedule of the day right and those type of strategies that the family workers are able to work with the families.”
“FASD (Network) primarily but I think that’s a critical component and it also serves its purpose very much within the community because they’re able to educate those service providers as well.”
“I would think the benefit is they can become advocates at a provincial level.”
“For them (Network) to be able to offer up that capacity to help someone with the plan helps us as a system.”
“The other piece that I see in that is the advocacy role that they play for individuals as well so when someone is trying to access mental health services.”
“The education I’ve seen that piece that they’re providing to the community around FASD. The services and supports helping people understand how best to support and how to understand individuals so that they can be the best that they can be.”
“Doing the training it gave me a better understanding of what people living with FASD are facing and a better understanding of where they can go to get more information to help themselves or if they have kids that are maybe living with FASD just a little bit broader perception that I’m able to share with the staff I work with.”
Through training, “they understand that it’s disability and not a choice and not a behaviour then it can make such a difference in success for an individual living with FASD and start to reduce some of the frustrations that professionals have when working with someone living with an FASD……to me a very large misunderstanding of what FASD is that it is not a choice a person is making it is brain damage.”
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Several of the professionals interviewed certainly did not see themselves as experts and they do rely on the Network to do the training, supporting, and advocating for these individuals living with FASD.
“I think I’ve become a stronger advocate within our system.”
Most of the professionals interviewed have been in the field for many years and have attended workshops and educated themselves on FASD from several sources. Six out of nine of the professionals saw themselves as having knowledge and increased competency in FASD. Several of the professionals interviewed certainly did not see themselves as experts and they do rely on the Network to do the training, supporting, and advocating for these individuals living with FASD. The Network’s support and education in the community has helped the interviewees make better intervention plans for clients living with FASD. However, it needs to be noted that since there is not ‘one size fits all’, without a diagnosis, it has been stated by interviewees it may be difficult to plan and respond to the unique needs of these individuals. The evaluation sought to determine if the service delivery systems are adapting to the needs of individuals who live with FASD, as this is one of the long-term outcomes for the Network. Interestingly enough, the answer falls between yes and no. One particular organization did set out to target their support and help to individuals living with FASD, but because of all the needs for other persons with a disability in the community, now it has become more of a generic service. One statement was, “I believe that what happened is we missed the mark, cuz in my experience individuals who have a FASD are people who need a pretty quick response sometimes an emergency or an urgency for response and that is not what can be provided.” Another interviewee stated, “It is but probably not as quickly as it could be and it’s been around….we’re still having to adapt to a lot not just FASD but we’re doing a lot of learning….on different syndromes.” Another professional remarked, “I think there has been improvements because of the awareness.” Yet another organization indicated, “We’ve come up with a plan we’re going to be able to assist and it’s going to strengthen our relationship even further with the Network and you know again it’s about those partners that we all need that partnership.” Still another, in response to the need for education and awareness on FASD, stated, “So we are able to educate families and provide support for families in a space that they are familiar with and they’re comfortable with and they feel safe in.” There seems to be new partnerships and changes in some organizations but not so much in others; however, from the interviews it is evident that there is progress and shifts. Another interviewee stated, “Well I would say that becoming the liaison and meeting with the ladies (Network)….and learning more about their program and they provided some material and different things I think I’ve become a stronger advocate within our system.” An important question we asked the professionals is, from their perspective, have they seen a shift in people’s perception of people living with FASD. Here are some of the comments that answer this question:
“Yes because I think that I’m going to tell you that personally well yes I guess I have personally seen changes we’re better the community is starting to be better educated and have a better understanding…..we never talked about FASD but now it’s more acceptable and there’s factual information and I think that we all have a responsibility to educate the community.”
“So I went to the book launch for FASD and I was blown away at like the stories were incredible that was one of the best things they have done. And the amount of people that were there were so it was totally impressive.”
“There’s certainly a lot of awareness about FASD when I go out and say I work in FASD prevention most people know what FASD stands for.” 17
There was a sincerity and desire to build strong partnerships to help the individuals who live with FASD.
An interesting observation by one of the professionals was about the walk that is held once a year to raise awareness of FASD. This is their assessment, “Unless you know somebody specifically who you know is affected by it FASD so yea cuz we I kind of gauge it when we do the FASD awareness walk that walk hasn’t grown a lot over the last 10 to 15 years and I keep saying there should be hundreds of people here because it’s happening every year on the same day at the same time and exactly the same it’s just it hasn’t really grown at all it is got the people that are there who usually come spend a little bit but not for the size that the city is growing.”
“I don’t know if there is a widespread shifting because like for example we have the FASD network but we’re the only one, I think they told me they don’t have it in other jurisdictions like they don’t have it in Regina they don’t have it up north so that to me is shows me that like again to use that word again it’s really in its infancy.”
“I don’t know what they’re getting with the prosecutors or what the court systems are getting but you know it was obviously under Mary Ellen TurpelLafond it was really out there in the air in the court system but since she’s gone you don’t hear about it (FASD) as much anymore so you need a person to advocate for people.”
Although it has increased, there is not enough awareness regarding FASD. There still seems to be a need for more work on raising awareness as there are many competing needs and trends that seem to take away from FASD awareness. The interviewees were asked if there was anything more that they wanted to say to the Network. The majority of the professionals talked about wanting to build authentic partnerships that work for everyone. There was a sincerity and desire to build strong partnerships to help the individuals who live with FASD. The one concern that kept coming up was the need for the FASD Network to have a greater ability to serve the entire province. It is understood that the Network’s main office is in Saskatoon and most of the face-to-face work is centred in Saskatoon, but there is an identified need for support to families outside of the city and for the service to be more available throughout the province.
Training In service to its vision and mission, the FASD Network holds itself accountable for a number of training-related outcomes that include the community, caregivers, and current and future professionals. These can be summarized as: • Increased awareness of FASD Much of the activities the FASD Network engages in have a “training/education” component, including conferences and staff participation on community committees.
• Increased awareness of information and support resources • Increased knowledge, understanding, strategies, and competency within participants’ respective roles • Sustained contact with the FASD Network Much of the activities the FASD Network engages in have a “training/education” component, including conferences and staff participation on community committees. To further their mandate, the FASD Network started their first formal training initiative in 2005 in partnership with Saskatchewan Liquor and Gaming Authority (SLGA) to deliver post-secondary training to frontline workers. 18
Training varies from 1 - 3 hours in duration and participants from all over the province attend.
Since the first initiative in 2005, training has evolved to the current configuration, consisting of five distinct modules designed for specific audiences. The modules and their outcomes are: • Post-secondary Training - for students from diverse disciplines, to help prepare them for future careers • Frontline Training Part 1 - workers learn the basics about primary disabilities and how they relate to an individual’s behaviours and actions • Frontline Training Part 2 - focuses on practical strategies for frontline workers and requires Frontline Training Part 1 as a prerequisite • Foster Parent Training - helps current and potential foster families understand the FASD disability and take away strategies and supports
Overall, the training evaluation findings indicate a strong alignment between the training outcomes the Network has identified as wanting to achieve and what participants indicate they got out of the training.
Almost 73% of participants responded that their practice has changed as a result of the training they participated in.
• Community Presentations - helps organizations and community members gain knowledge and understanding about how FASD occurs and affects individuals. These presentations can be tailored to specific audiences. Training varies from 1 - 3 hours in duration and participants from all over the province attend. The Network conducts an immediate post-training evaluation after all training events. Extensive evaluation of the Foster Parent Training was conducted in 2013, producing a number of recommendations that were reviewed and implemented.
Training Evaluation Findings Overall, the training evaluation findings indicate a strong alignment between the training outcomes the Network has identified as wanting to achieve and what participants indicate they got out of the training. The majority of respondents of the post-training survey sent out in the FASD Network newsletter (Appendix G) were either from Community Based Organizations (CBOs) or the Ministry of Social Services. Other sectors the respondents indicated they were from included the Ministry of Education, Ministry of Health, Ministry of Justice, and one identified as “help.” Almost 73% of participants responded that their practice has changed as a result of the training they participated in.
Figure 1: Practice changed as a result of the training.
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Of those respondents, 51% indicated that the degree to which their practice had changed was the maximum indicator of “greatly” or just one measure below greatly. Maintaining contact with the FASD Network was also seen as helpful by 66.7% of post-training survey respondents. 83% of respondents indicated they have more information and resources to support their clients as a result of the training.
When asked if they currently have some contact with the FASD Network, and the frequency of that contact, 25% of post-training survey respondents indicated contact once a month or more, 25% indicated 1-2 months, 25% indicated 3-6 months and 17% indicated once a month or less. Over 33% of the contact is through the Network website and 41% through email and personal contact. Facebook, the helpline, and referral were evenly split at 8% responses each. Finally, 83% of respondents indicated they have more information and resources to support their clients as a result of the training.
Figure 2: More information and resources to support their clients as a result of the training. Further breakdown of responses from the various training modules from 2014 through 2016 is as follows: Post Secondary Training - based on 1384 responses: • 94% of participants felt they gained a better understanding of the disability of FASD • 86% felt more prepared to support someone who has an FASD • 92% said they will use the information in their professional lives • 84% indicated they would use the information in their personal lives Comments aligned with these high numbers even when people felt they had knowledge before the training. “Previously I had a large knowledge and I still felt I learned a little more.” Participants felt they had a “better understanding now,” felt “more educated,” and their interest was “sparked to learn more.”
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Frontline Training Part 1 - based on 391 responses:
Even though 86% of participants indicated they had knowledge going into the training
The participants in this training module span a wide variety of occupations and roles in serving and/or interacting in some way with individuals who have FASD and their families. These include care home operators, youth workers, researchers, caregivers, counsellors, psychologists, addictions workers, teachers, crisis management workers, and constables, to name a few. Forty-eight percent of participants indicated they had limited knowledge, and 38% indicated they were knowledgeable before participating in the training. After the training: • 32 % agreed and 63% strongly agreed that the training session strengthened their knowledge of FASD • 47% agreed and 63% strongly agreed that they felt more confident in working with people living with FASD
“I feel like my knowledge of FASD has significantly increased”
“I’ve learned more than expected”
• 95% of participants agreed or strongly agreed that a booklet the Network has produced will be a useful resource • 94% of participants indicated they would attend another training session organized by the Network Even though 86% of participants indicated they had knowledge going into the training, the comments such as “my knowledge was from prior years,” “I have a much better understanding now,” “I feel like my knowledge of FASD has significantly increased,” and “I’ve learned more than expected” reflect strong movement towards the mandate of increased awareness, knowledge, and understanding FASD. The mandate of increased strategies and competency is reflected in comments such as “should be part of every professionals training,” “FASD training should be mandatory for all social workers and other professionals,” “many ideas I can utilize in profession,” and “the training is immediately relevant to my work.” Frontline Training Part 2 - based on 113 responses:
“FASD training should be mandatory for all social workers and other professionals”
This training module moves deeper into practical strategies and tools for supporting individuals with FASD. Responses clearly indicate the Network continues to meet its training mandate through this module. • 97% of participants agreed or strongly agreed that the training session strengthened their knowledge of FASD • 95% of participants agreed or strongly agreed they feel more confident in working with people living with FASD • 96% agreed or strongly agreed that the toolkit will be a useful resource • 92% agreed or strongly agreed that they found the strategies useful These responses are especially telling considering all participants would have participated in Frontline Training Part 1 so would have come into the training with a base of awareness, knowledge, and understanding as well as previous experience. Eighty-seven percent strongly agreed they would recommend this training to others. Several comments indicated the strategies and skills would “help me with my work with families.” The following comments clearly indicate a move toward increased strategies and competency:
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• “I learned so much to take back to my teams who all support individuals who are living with FASD.” • “I feel 100% more confident in the work I do with people who are living with FASD.” • “Would definitely recommend everyone to take this training.” • “Having a degree I have been thoroughly trained with the topic of FASD. I can honestly say that I have never had a better workshop than this one. I will be passing on this information and resources to past, present, and future clients.” Foster Parent Training - based on 66 responses: Once again, the Network’s training mandate is clearly met within this provincially mandated training. • 95% of participants agreed or strongly agreed they gained a better understanding of the disability • 98% of participants agreed or strongly agreed they feel more prepared to support someone who has an FASD The lived experience of the trainers and real-life lessons they share is considered “invaluable” by many respondents.
Multiple participant comments affirmed these numbers indicating the training was “very useful” with “good suggestions/ideas and strategies.” Although not specifically categorized as formal training, Parent Retreats facilitated by the Network consistently indicate achievement of the mandate with 91% of participants indicating having gained new parenting strategies and tools they will use. A particular element of the training to note that was consistently commented on in all the training modules is the fact that the training provided by the Network has a high focus on “first-hand experience.” The lived experience of the trainers and reallife lessons they share is considered “invaluable” by many respondents.
Summary and Conclusion Based on the consistently glowing reviews of training conducted by the Network, as well as survey responses, it is reasonable to state that most participants’ awareness and understanding of FASD increased as a result of the training.
The aim of this evaluation was to conduct an evaluation of FASD in the areas of support services and training and determine whether the outcomes as identified by the FASD Network are being achieved. The stakeholder map identified who should be interviewed. The questions were designed for each group interviewed (individuals, caregivers, funders and professionals) to collect data that would assess the achievement of the outcomes. The long term outcomes of the program are: increased awareness of the FASD Network; better able to access disability informed services, decrease contact with intervention systems; and reduced stigma. Based on the consistently glowing reviews of training conducted by the Network, as well as survey responses, it is reasonable to state that most participants’ awareness and understanding of FASD increased as a result of the training. Several professionals talked about being better at advocating for individuals with FASD after attending the training. Training is spread across the province demonstrating the reach of the FASD Network which results in many people receiving FASD information. Compared to when the agency started twenty two years ago, many people have been made aware of FASD and the affects it has on individuals and caregivers. 22
Professionals spoke about how increased knowledge about behaviours and cognitive challenges have increased the ability of police to interact more effectively and positively with individuals they know to have FASD.
School systems have better understanding about the needs of these students, which leads to better successes in the academic world.
Many spoke about the reduced stigma as a result of more knowledge that FASD is a brain injury and those affected have challenges they have to live with throughout their entire lives.
There is no ‘one size fits all’ when we speak and describe FASD. The need to continue to work on reducing stigma in the larger community will exist for a long time.
Many of the caregivers of adult children talked about how much more is known about FASD and how many more professionals know about FASD compared to when their child was young. This being said, it was identified by several professionals that were interviewed that more needs to be done. One professional spoke about a high profile advocate who helped raise awareness in the past. Currently there does not seem to be such a person who is frequently in the media raising awareness of FASD. There has been many inroads made in professional fields regarding the needs of individuals living with FASD. We can safely say that, because of the many training sessions, awareness of FASD and the Network has been raised. Caregivers who now have adult children in the 20-40 age range spoke about the lack of services and understanding of FASD when their children were growing up. Conversely, the parents who had very young children from two years and up were able to acquire many supports and services for their children with the help of the Network. This does not mean that all individuals living with FASD receive the services they need. Even though the FASD Network is a provincial organization, services vary from rural to urban settings with the majority of support work centred in Saskatoon. To be fair, the FASD Network does have a support phone line that operates during business hours five days a week which covers the entire province. They have also started an outreach position in order to provide support throughout the province through the use of technology. The Network does have an excellent website and free print resources that individuals can access for information and support. There has been a tremendous shift in services in the community - from the medical system, to school systems, to a Government program called the Cognitive Disability Strategy. There are now more programs, and people are certainly able to access disability informed services more easily. Is it enough? Probably not. There has however, been forward movement and development over the past twenty years. It is difficult to answer whether contact with intervention systems has decreased. Professionals spoke about how increased knowledge about behaviours and cognitive challenges have increased the ability of police to interact more effectively and positively with individuals they know to have FASD. School systems have better understanding about the needs of these students, which leads to better successes in the academic world. Ministry of Social Services (MSS) Child and Family Programs (CFP) spoke about how it is better for children to remain in the home rather then coming into care. They only recently learned about FASD and how best to help individuals and caregivers. The FASD support workers now go into the homes of caregivers and individuals identified by MSS as needing support to help them manage their children and lives by providing many hands on tools and strategies. Again, we need to remember that the home support program is only in Saskatoon and area. There is no doubt that this type of home support program would be needed all over this province, but is unavailable due to funding restraints. The Network is aware of this issue and has been seeking funding sources for expansion of its support services. There is a move for less contact with intervention systems but the movement would have to grow to cover the province before it could be said that there is visible evidence indicating this outcome is being achieved provincially. Reduced Stigma comes with education and increased awareness. Many spoke about the reduced stigma as a result of more knowledge that FASD is a brain injury and those affected have challenges they have to live with throughout their entire lives. It is only recently that FASD has become known as a syndrome with a wide spectrum that individual’s can fall into. There is no ‘one size fits all’ when we speak and describe FASD. The need to continue to work on reducing stigma in the larger community will exist for a long time. There also still needs to be more work done 23
The FASD Network has certainly stood the test of time by growing and evolving through the years, adapting to the needs of the people they serve.
as new professionals enter into the workforce, ensuring they continue to receive training in FASD to make certain children living with FASD are getting the help they need. To reiterate again, for people to be able to gain support for over 22 years from the Network says a lot about the wide array of services the Network provides and the care and support they offer. The FASD Network has certainly stood the test of time by growing and evolving through the years, adapting to the needs of the people they serve. This certainly speaks to the strength and resiliency of the organization. On a final note, as one interviewee stated, “anyway I look at the Network I see support”.
“anyway I look at the Network I see support”
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References Centre for Addiction and Mental Health. (2012) Fetal Alcohol Spectrum Disorders (FASD). Retrieved from http://www.camh.ca/en/hospital/health_information/ a_z_mental_health_and_addiction_ information/Fetal_Alcohol_Spectrum_Disorders/Pages/default.aspx Dinning, B.L., Podruski, A., Fox, D., & Wright, A. (2004) We Care: Practical Skills For Front-line Workers Working With Adults With Fetal Alcohol Spectrum Disorder. Ottawa, Ontario: Sponsored by HRSDC National Homelessness Initiative. Government of Canada. (2005). Fetal Alcohol Spectrum Disorder: A Framework for Action. Retrieved from http://www.phac-aspc.gc.ca/publicat/fasd-fw-etcaf-ca/intro-eng.php. Government of Canada. (2007). Fetal alcohol spectrum disorder (FASD): Data collection and reporting. Retrieved from http://www.phac-aspc.gc.ca/hp-ps/dca-dea/prog-ini/fasd-etcaf/publications/pdf/factsheet2 fasd-etcaf-eng.pdf. Government of Canada. (2010). An Inventory of Literature on the Assessment and Diagnosis of FASD Among Adults: A National and International Systemic Review. Retrieved from http://www.phac-aspc.gc.ca/hp-ps/dca-dea/ prog-ini/fasd-etcaf/publications/ad-ed/04-eng.php#lien46. Government of Canada. (2014). Fetal Alcohol Spectrum Disorder (FASD). Retrieved from http://www.phac-aspc.gc.ca/hp-ps/dca-dea/prog-ini/fasd-etcaf/index-eng.php. Health Canada. (2006). It’s your health: Fetal alcohol spectrum disorder. Retrieved from http://www.hc-sc.gc.ca/hl-vs/iyh-vsv/diseases-maladies/fasd-etcaf-eng.php. Riley, E.P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.). (2011). Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley- Blackwell.
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APPENDIX A Stakeholder Analysis
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YWCA
Suppliers
Previous clients (who may or may not re-engage) SSFRE Sask Society of Fundraising Executives
MEDIUM Influence
CDS
Other FASD organizations - non-competitive (across Canada)
Front line workers who have not taken training
Professionals that “don’t get” FASD & already know it
LOW Affected/Impacted
SK Sport
Competitors (funding)
Other community agencies—i.e. Egadz, MHAS, CLSD, Sk. Abilities, CUMFI, Autism Services, CLASI, PO, Patient Aid, SAID
SPI
Partners
In
flu
en
ce
FASD team
Caregivers
People living with FASD
Board
IG H
H
Power - take or give resources Interests - lose or gain Legitimacy - legal, moral right
Child & Family Services
MSS Health Funders
Public
Mentors (Paid Cognitive Disability Individual Strategies)
MEDIUM Affected/
Mental Health Strategy
HIGHLY Affected/Impacted
SAID— Saskatchewan Assured Income for Disability
DISC Disability Income Support Coalition
Saskatoon Police Advisory Committee (Cultural team)
Frontline workers who have taken training
Professionals that “get” FASD & want information
LO
W
I
l nf
e nc e u
FASD Stakeholder Analysis as of Aug.30.16
APPENDIX B Logic Model
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FASD Network Evaluation 2017 LOGIC MODEL FASD Network Mission: Enhance the lives of individuals & families living with FASD INPUTS
Support
STAKEHOLDERS
People living with FASD
Peer support meetings
Able to set & attain goals
Staff support Development of support, intervention & accommodation plans
Caregivers
Includes family, foster parents, friends people with FASD caring for someone
OUTCOMES
ACTIVITIES
Parent retreat
Caregiver meetings
Tailored education & training Facebook group
Caregiver workshops
Feel they are contributing members of the community
Toll free line
Feel able to develop & implement interventions & accommodations
Families feel person they are supporting is a contributing member of the community
Feel safe & supported
Able to manage day-to-day
Increased awareness of available supports
Decreased feelings of isolation
Build & support peer networks
Feel successful
Increase in caregiver self-care
Better able to access disability informed services
Research Project
Training
Current & future professionals
Includes anyone coming in contact with FASD i.e. school staff, post secondary students
Conferences
Members of the Police Advisory Committee
Involvement with other community agencies
Mentorship, recruitment, training & referral
Support & coaching for police (Police Initiative)
Involvement with justice system
Direct suppport where clients are shared
Key support for the Mental Health Strategy
FASD & MSS partnership to empower families
Decrease contact with intervention systems
Network newsletter Book Journal "Living with FASD" Awareness events Social Media
Increased awareness of FASD
Awareness of information & resources to support their clients
Better able to access disability informed services
Increased knowledge, understanding and competency
Sustained contact with FASD network
Website
Communication
Community
Fundraising
Provincial campaign
Increased awareness of the FASD Network
Increased provincial reach of network
Increased capacity to deliver training
Increased capacity to support caregivers
Intervention systems i.e. health, education, social services & justice respond to the unique needs of FASD clients
Reduced stigma
APPENDIX C Interview questions - Individuals 1. What do you know about the FASD Network?
2. How do you know about the FASD Network?
3. How do you use the FASD Network? (What services, how much do they use)
4. When did you start coming to FASD activities? (After length of time)
5. How do you feel when you’re here/involved/participating?
6. What difference has the Network made in your life? • Able to manage your day • Less isolated • Feel successful • Able make goals and attain them • Feel safe and supported
7. Anything else you’d like to tell us about FASD Network?
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APPENDIX D Interview questions - Caregivers 1. How long have you been a caregiver for a person living with FASD? 2. How many persons living with FASD are you caring for? 3. How did you hear about the FASD Network? 4. How has the FASD network helped you? i.e. • Develop & implement interventions & accommodations • With strategies/ideas/options to manage day to day • Feel supported • Increase your awareness of available supports • Feel more successful • Feel less isolated • Increase your self-care 5. Do you think the individual(s) you care for feel more successful? • Contributing members of the community • Able to manage day to day 6. What activities offered by the FASD Network such as retreat, meetings, workshops do you participate in? 7. Is there anything that prevents you from participating in FASD Network activities? 8. What other activities/services would be helpful to you that don’t exist in the broader community at this time? 9. Have you seen a shift in attitudes i.e. more openness, better service, etc. over the last few years? 10. In your experience, is the community responding differently towards people living with FASD? 11. Is there anything else you’d like to tell us about your experience with the FASD Network? 29
APPENDIX E Interview questions - Funders 1. What is the context of your contact with the FASD Network? (What do you fund them for and why)
2. What do you see as evidence of the benefit of the FASD Network on: a. People living with FASD b. Caregivers c. Professionals d. The system you work in 3. How do you perceive the FASD Network in meeting your objectives as a funder?
4. Has your knowledge and understanding increased about FASD?
5. Have you seen any shifts in people’s (society, system...) perception of people living with FASD?
6. Is there anything you would like to tell the FASD Network staff and/or board?
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APPENDIX F Interview questions - Professionals 1. What is the context of your contact with the FASD Network?
2. What do you see as evidence of the benefit of the FASD Network on: a. People living with FASD b. Caregivers c. Professionals d. The system you work in 3. As a result of your connection/association, do you think you are more competent in working with your clients who are living with FASD?
4. Do you think you are better able to develop and implement helpful interventions and accommodations for your clients/people living with FASD and/or their caregivers?
5. Do you feel your system is adapting to the needs of FASD clients? Describe.
6. Have you seen any shifts in people’s (society, system...) perception of people living with FASD?
7. Is there anything you would like to tell the FASD Network staff and/or board?
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APPENDIX G FASD Post Training Evaluation Survey 2017 1. What sector do you work in? Ministry of Education Ministry of Health Ministry of Social Services CBO - Community Based Organization Other (please specify)
2. Has your practice changed as a result of the training? Yes No Not sure 3. To what degree has your practice changed as a result of the training? Not at all changed
Somewhat changed
Greatly changed
N/A
4. In your work would it be helpful for you to maintain contact with the FASD Network? Yes No Not sure N/A
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5. If you currently have some form of contact with the FASD Network how often is that contact?
Once a month or more Once every 1-2 months Once every 3 - 6 months Once a year or less Other (please specify)
6. What has been the nature of that contact? Facebook Website Helpline Referral Other (please specify)
7. As a result of the training, do you have more information and resources to support your clients? Yes No N/A
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