Now, 20 years later, the Network is a community based provincial ... disability. We need to keep in mind the various ...
The FASD Network’s
Supports and Services
ABOUT THE NETWORK
The FASD Network of Saskatchewan is a provincial organization that works with families, children, and adults affected by Fetal Alcohol Spectrum Disorder. A group of dedicated parents came together in the early 1990s seeking support and understanding. They had common concerns about the challenges related to parenting children affected by prenatal exposure to alcohol. When the Network began, very little was known about FASD. Families faced stigma, lack of services, and misunderstanding. Now, 20 years later, the Network is a community based provincial organization with an office in Saskatoon. Over the years, the level of knowledge and understanding in Saskatchewan communities has grown along with the Network. The Network has expanded from a group of concerned parents into an organization led by a 12-member board of directors offering support, training and events across the province.
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UNDERSTANDING FASD Fetal Alcohol Spectrum Disorder (FASD) is a disability that can occur in children, youth, and adults when alcohol is consumed during pregnancy.
FASD is a life-long, brain-based, and often invisible disability. FASD is a unique disability that affects each individual differently.
Secondary disabilities are not caused directly by prenatal exposure to alcohol but they develop later in life due to a poor fit between an individual with FASD and his or her environment. Alcohol is a harmful substance called In 2015, changes were recommended The poor fit is due to gaps in services, a teratogen that causes damage to to the diagnostic guidelies for FASD. supports, and understanding of the a growing fetus. Alcohol is the most The diagnoses are now: disability. commonly used teratogen and the most dangerous because alcohol • FASD with sentinel facial findings We need to keep in mind the various molecules cross freely though the • FASD without sentinel facial find- factors surrounding the choice to placenta and affect the central nervings drink during a pregnancy when we talk ous system. • At Risk for Neurodevelopmental about prevention. The public requires disorder and FASD clear and accurate information about In Saskatchewan, it is believed that the harmful effects of alcohol on a 1 in 100 people may be affected by Primary disabilities are those dis- fetus. There is no known safe amount FASD. However, it is difficult to know abilities that are the direct results of of alcohol or a known safe time during just how many families are affected prenatal alcohol exposure. The com- pregnancy to consume alcohol. For by FASD as a lot of individuals go mon primary disabilities are catego- these reasons, it is best for women undiagnosed their entire lifetime. The rized by physical (body and health), to abstain from alcohol throughout signs and symptoms of FASD often go behavioural (actions and reactions), the entire pregnancy. This informaunnoticed and are masked by other cognitive (thinking and learning), and tion and message needs to be widely factors in the individual’s life or are sensory (information from senses) available and consistent in communiattributed to other causes. disabilities. ties and throughout the health-care field.
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SUPPORT PROGRAM The FASD Network Support Program was created to give families and individuals direct support in their daily lives. The program aims to work with families and circles of support to gain positive outcomes for those living with FASD so they recognize themselves as safe, supported, and contributing members of the community. • It is a voluntary program • A diagnosis is not required
FASD is a brain based disability, there is potential for misunderstandings or unrealistic expectations. Team planning with an individual can be important in areas such as schooling, employment, funding and daily living. Support workers can look at struggles, behaviours, triggers, and successes through the lens of FASD.
Saskatoon Services
An FASD support worker will work to clarify the individual’s short-term goals and dePrimary Goals termine a plan to reach these goals. They • Educate about FASD can help identify strategies for success at • Provide strategies for living with FASD home, school, and work as well as advocate • Referrals to community programs for services and more understanding about FASD. The program provides assistance via The Network’s support workers have an in- case management, peer support, stratedepth understanding of FASD that can be gies, justice system navigation, referrals to shared to support individuals and families community programs and more. living with FASD achieve success. The FASD support workers can be important members in an individual’s support team.
Caregiver Support Meetings
Every third Wednesday of the month, the Network hosts a Caregiver Support Meeting for caregivers supporting individuals living with FASD. These meetings are an informative and engaging space for parents to connect with each other for ongoing support. Together participants will explore how prenatal exposure impacts individuals across their lifespan and learn support techniques to help their children be successful. These meetings provide a safe environment for open and supportive discussion. If you are interested in organizing a group in your community the Network can help. We will bring interested caregivers to Saskatoon for a one-day workshop on facilitating a support group. The workshop covers information around establishing a group, your role as a facilitator, navigating difficult topics and much more.
Peer Support Meetings
The Network hosts a monthly meeting for individuals living with FASD. Peer Support is often an effective strategy to help individuals cope with a disability and the effects it may have on their everyday activities. Participating in peer support with someone else living with FASD can teach you different strategies and coping techniques you many not think of on your own.
Life skills Workshops
The FASD Network is now offering life skills workshops for individuals living with FASD. The workshops are held twice a month. The goal of this programming is to create an opportunity for individuals living with FASD to learn necessary and practical skills. Each session will cover a topic from an area in life where individuals living with FASD may require assistance or experience struggles. These workshops are open to everyone. photo credit to Tourism Saskatchewan
PROVINCIAL SERVICES Community Outreach Program
The FASD Network has expanded its support services to individuals and families affected by FASD living outside of Saskatoon. The goal of the Community Outreach Program is to provide support to anyone who needs it in Saskatchewan.
province. It is a closed group ensuring that all information posted is only shared with the approved members. Visit the page to request to join.
Toll-free Phone Line
The toll-free line was implemented approximately twelve years ago to meet the needs of parents and professionals by helping them access appropriate information and services in their area. The Network’s support workers are able to provide guidance and advice over the toll-free line to families and individuals who need assistance.
The Outreach program will provide support by utilizing different types of technology like teleconferences, Skype and FaceTime to connect with clients throughout the province. The Outreach program aims to support people in the same manner as the regular Support Program, by utilizing different methods of communication. Families and individuals that are experiencing a tough time and need the advice of qualified professionals can FASD Caregiver Support The Network recognizes that some- phone in to ask possible questions times caregivers can feel isolated. they may have about the disability, The FASD Caregiver Support Face- discuss potential strategies, receive book group allows caregivers to inter- answers concerning assessment and act with other caregivers across the diagnosis, or get help finding resource
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options in their local community. The toll-free line is also available to anyone who is simply looking for someone who understands and can listen to their story or struggle. The FASD Network toll-free line is available Monday to Friday between the hours of 8:00 a.m. and 3:30 p.m. Please call 1-866-673-3276 to speak to a support worker.
Diagnosis & Assessment
A diagnosis can open up the door to services, supports, and a better understanding of the disability for individuals, their caregivers, and others that support them. In Saskatchewan, the criteria for a diagnosis are the same across the province, but the process and wait lists are unique to the diagnostic clinics in each area.
ACCESSING SERVICES Who can access services?
The Support Program works with: • Individuals living with FASD • Family members • Caregivers • Support teams (with an individual’s consent)
What supports are provided?
Goals and supports can include: • Education and resources • Identifying and supporting behaviours related to FASD • School and employment • Family relationships • Life skills development Support services are voluntary. Sup- • Access to funding port cannot be mandated; individuals • Accessing heath care and families can choose whether they • Working with Child and Family would like supports. Services • Working with the Justice System A diagnosis on the spectrum of FASD • Healthy pregnancies is not required to access services. • FASD assessment and diagnosis
How are services accessed?
If individuals or families would like more information on the Network’s Support Program, they must call or email the Network directly. Agencies cannot refer individuals. To talk to a support worker: call: 1-866-673-3276 email:
[email protected]
APPLYING FOR CDS
An individual or a family member can fill out the CDS application form. If assistance is required a current support worker to the individual can help, or he or she can contact CDS and a consultant can provide assistance. A diagnosis is not needed to be eligible for CDS services. It is offered through the provincial health region and any children, youth, or adults in Saskatchewan can apply. The CDS is not offered to those living on a First Nation. The Network can: • Put you in touch with the consultant in your region • Help clients with the application process • Connect you with mentors and respite care providers or an organization in your community that provides these services
COGNITIVE DISABILITY STRATEGY
Without services and supports, individuals with FASD are For families and individuals living with FASD this strategy at a high risk for developing secondary disabilities. Our means: community members with FASD and other cognitive dis- • Children and youth may be eligible to access funding abilities are vulnerable and almost always have a variety for services that they do not currently receive such as of unmet needs. mentors or tutors. • Families may be eligible to access respite care or The Cognitive Disability Strategy (CDS) is a provincial plan additional therapy services for children. offered through each health region in Saskatchewan for • Adults may be eligible to access mentors who can citizens with cognitive disabilities such as FASD. The strathelp with the activities of daily living, such as keeping egy helps individuals with needs that are not met through appointments, taking medications, or shopping. other service providers. When unmet needs are addressed through services and supports, individuals of all ages have Mentors a greater opportunity to be safe, healthy, and successful. Individuals with FASD require guidance more often and a Every person with FASD is unique and will have different strengths and struggles. The CDS is a individualized program so it might look different for each person. The Cognitive Disability Strategy is meant to: • Improve the availability of services for assessment and diagnosis • Provide services and supports to address the unmet needs of people with FASD • Enhance the knowledge and skills of people who provide services to individuals with FASD • Enhance FASD prevention and intervention
level of guidance that is more structured and long term due to their disability. A mentor can be a perfect resource to provide extra support. The relationship between a trusted mentor and an individual with a disability, such as FASD, can result in a variety of positive outcomes. CDS funding is often used to access the services of mentors. In Saskatchewan, each region has a CDS consultant that can help individuals and families identify needs, set goals, and seek out a mentor. Also available across the province is the ‘Mentoring Success’ website which provides information on CDS and a location to connect with potential mentors. It can be visited at www.saskmentors.com.
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MENTAL HEALTH & FASD
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A mental illness is a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others, and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life. Mental illnesses can affect persons of any age, race, religion, or income (National Alliance on Mental Illness).
If there is a co-occurring FASD with mental health issues, the treatment will likely need to be adapted. For example, individuals with an FASD may struggle with verbal receptive language processing. Most treatment approaches rely on verbal receptive language processing. Therefore approaches such as these may be unsuccessful. If an FASD is not recognized, expectations for the individual may be not appropriate, thus making success difficult.
FASD is often an invisible disability and many people up to adulthood are left undiagnosed or misdiagnosed with other mental health problems. Individuals with FASD may develop mental health issues because diagnosis and interventions did not happen. As well, many individuals with FASD live with co-occurring mental illnesses that can compound the struggles they face.
The Canadian Mental Health Associate (CMHA) provides valuable information about mental illness and how to strengthen and maintain one’s health.
It is important to determine whether a person has a cooccurring mental health issue or whether the behaviours are due to how the brain processes for individuals with FASD so that misdiagnosis doesn’t happen and appropriate supports can be put in place. Some of the cooccurring or misdiagnosed mental illnesses can include attention deficit/hyperactivity disorder, bipolar disorder, autism spectrum disorder, and learning disabilities.
Regina Office (306) 525 - 5601 1-800-461-5483
[email protected] Saskatoon Office (306) 384 - 9333 cmhasaskatoon.ca
MENTAL HEALTH COURT
The Mental Health Strategy is a court that seeks to better understand people who are living with brain-based disabilities such as FASD before making a decision about their charges. The Mental Health Strategy is a voluntary court system. In order to be involved, an individual must plead guilty to his or her charges. This court works with the individual to identify a support plan that will help them live a healthier life and stay out of trouble with the law. Once an individual is put on the Mental Health Strategy docket, they can begin receiving support from the various organizations that attend. The FASD Network is represented at the Mental Health Strategy in Saskatoon. One of the support staff attends pre-court meetings and the court proceedings to support individuals who suspect they may may live with FASD as well as individuals who have a diagnosis. The Network supports the individual in the court process as well as with assessments, diagnosis, and access to other community supports.
FASD NETWORK OF SASKATCHEWAN 510 Cynthia St Saskatoon, SK 1-866-673-3276 www.saskfasdnetwork.ca
