Working with Persons with Cognitive Disabilities
Working with Persons with Cognitive Disabilities Mentorship or respite services can have a profound impact on a person with a cognitive disability. It is a commitment that carries with it its own special rewards. But it is also a commitment that can be emotionally and physically challenging. This handbook provides you with guidance, tools, and strategies for use in your role as a support worker. You are encouraged to seek advice and support from the individuals support team whenever you face difficult decisions/choices. Please note that the resources and information provided in this hand book are general in nature. You are encouraged to consult professionals who can provide expertise in specific circumstances, such as writing a contract, dealing with challenging behaviour, income tax requirements, etc. © 2014 FASD Support Network of Saskatchewan Inc. All rights reserved. First published and developed in Canada in December 2006 between the FASD Support Network of Saskatchewan and the Saskatoon FASD Supported Housing Project. Project Developer, Eunice Bergstrom. Revised in 2014 by the FASD Support Network of Saskatchewan Inc. in consultation with staff from the Cognitive Disability Strategy, Saskatchewan Association for Community Living, Aboriginal Family Services, Central Urban Metis Federation Inc. and Autism Services of Saskatoon. FASD Support Network of Saskatchewan Inc. 510 Cynthia Street Saskatoon, SK S7L 7K7 [email protected] Toll free: 1-866-673-3276 In Saskatoon: (306) 975-0886 Funding provided by the Cognitive Disability Strategy of Saskatchewan, Government of Saskatchewan. 1 Table of Contents Part One - You as a Support Worker 1. Know Yourself………………………………………………………...... 5 2. Respite………………………………………………………………….. 6 3. Mentorship………………………………………………………....…… 7 a. Planning…………………………………….…………….... 8 b. Working as a Part of a Team………………………..…… 9 c. Individual Support Plans……………………………........10 d. Establishing Boundaries…………………………………. 13 e. Reporting and Confidentiality………………………….... 14 f. Managing Stress………………………………………….. 15 g. Mentor Examples…………………………………………..16 Part Two - Disability Specific Information 1. FASD……………………………………………………………….…… 18 2. Autism Spectrum Disorder………………………………………..…… 23 3. Intellectual Disabilities…………………………………………..….….. 27 4. Acquired Brain Injury…………………………………………………… 27 Part Three - Legal Issues 1. Child and Family Services Act……………………………………….... 29 2. Confidentiality……………………………………………………….…... 29 3. Safety……………………………………………………………….……. 30 4. Emergency Contacts and Information………………………………... 32 5. Health Act………………………………………………………..………. 33 6. Self-Employment………………………………………………….…….. 35 Part Four – Saskatchewan Cognitive Disability Strategy 1. What is the Saskatchewan Cognitive Disability Strategy………...…. 38 2. Consultant……………………………………………………………....…39 3. Process to Apply for Funding…………………………………………....39 4. Individual Support Team………………………………………….….…. 40 5. Forms, Contracts and Reports…………………………………….....… 41 Part Five - Community Resources 1. Accessing Community Resources………………………………….…... 48 2. Suggestions…………………………………………………………….…. 48 3. Community Organizations- Saskatoon…………………………………. 49 4. Community Organizations- Regina….………………………………...... 51 2 3 Part One You as a Support Worker 4 1. Know Yourself The nature of support workers as defined in this guide relates to “mentors” and “respite care providers” to those with cognitive disabilities. Though the hours are often part time in nature, mentorship and respite services are incredibly valuable and can lead to positive accomplishments for individuals with disabilities and their families. What immediately follows is a description of what a respite care provider does. The remainder of this handbook will focus on mentorship as a support worker. However, there are many guidelines (i.e. documentation, boundaries, confidentiality, etc.) outlined in the handbook that are applicable to respite care providers as well as mentors. Personal Awareness Before you can really get to know those you are mentoring and assess their strengths, skills and challenges, it is important to know and assess yourself. It is important for you to also look at your strengths and limitations. Consider the following questionnaire and write down your thoughts: I am/ will be a good mentor because I have the following strengths: And the following skills and interests: I am aware that I have some challenges in the following areas: I will meet these challenges by: I realize that it is not always easy to be a mentor, and that sometimes I will need support from others (while maintaining confidentiality). In my life, I have these supportive people: o Professionally: o Personally: And these activities that I enjoy and that re-energize me: 5 2. Respite Respite care provider Parents and primary caregivers raising one or more children with a cognitive disability often face increased stress levels due to the nature of their children’s disabilities. As such, respite care allows those individuals the opportunity to have regular mental health breaks. Respite providers act as caregivers– ensuring children in their care are safe and protected. Further, respite care providers act as positive role models while guiding behaviours in a constructive manner, such as encouraging improved social and problem solving skills. Appropriate respite activities Based on individual interests, respite care providers can find many different ways to engage individuals in their care in positive ways. Providing respite can be much more than simply keeping children “busy” – it is an opportunity to enrich children’s lives and build upon their strengths. While respite provides parents and primary caregivers a much needed mental health break, it can also offer a chance for children to gain new experiences available in their community and expand their network of support. Activities may include: arts and crafts sports or physical activities (biking, swimming, hockey, etc.) gardening playing in a park going to the movies or library playing video games, board games, puzzles using music as therapy (drumming, singing, listening to music, etc.) model construction (wood working, Lego, fixing electronics, etc.) experiencing cultural activities (cooking, hoop dancing, painting Easter eggs, etc.) home economics (sewing, cooking, beading, etc.) 6 3. Mentorship Being a mentor to someone with a cognitive disability is a service intended to bring greater quality of life and increased independence to the individual (mentee) you are supporting. As a mentor your role is to build a relationship based on trust with the person you are mentoring , while presenting opportunities for that individual to learn, grow and be more self-sufficient in everyday life. A mentor acts as a positive role model, increases community involvement for the mentee, helps teach and improve daily life skills (such as budgeting, planning and cooking) and offers a variety of other supports where needed. It is important to remember that regardless of what type of support you are providing, any relationship between you and the client(s) is professional. Although the client may see you as a friend, you are performing a paid service derived from government funds to someone in need, and that the relationship stays professional and not become personal in nature. It is important to note that there are some circumstances where a friendship may be maintained once the paid services are complete. These circumstance would be discussed within the team. What is your role as a mentor? 1. Provide support and assistance in the areas of daily living skills, leisure/recreation, and emotional support. 2. Help the individual to build relationships and a community of support. 3. Assist the person they are supporting to take part in regular and frequent activities where ongoing meaningful relationships and friendships can occur, to help in developing a natural community for the individual. 4. Be a positive influence and role model to the person(s) you are supporting. 5. Assist the person they are supporting to experience new things and to provide new opportunities for personal growth. Mentors assist their mentees by completing tasks and activities with them, not for them. Ideally, as a mentor you will be helping to build skills and abilities that allow the person you are supporting to be a greater participant in the community while achieving a greater level of independence or interdependence. This is a reminder that the individual needs to be treated with dignity and respect and have the satisfaction of working through his or her life circumstances as a central part of the support group. The mentor becomes one of the people in the circle of support, along with family, friends, professionals, and others who wish to be involved in the person’s life. Professional Development The more you know about cognitive disabilities, the more you can understand the individual you are working with. Information and knowledge leads to a greater likelihood of success for the person you are supporting and an increased sense of competence for you. There are training opportunities that you may be able to access through appropriate community based organizations. See the Resources Sections for lists of books, articles and web sites to help you learn about cognitive disabilities. 7 A. Planning People with cognitive disabilities have many strengths and with the proper supports can be successful. Success does not necessarily mean complete independence but rather interdependence. Interdependence recognizes the need for people in our lives that can help support us. Successful interdependence starts with good planning by the individual and his or her circle of support. It is maintained with regular, ongoing involvement of a mentor who helps to put the plan in place in consultation with team members. While interdependence or independence can be different goals for different organizations, the common goal is providing appropriate supports that will enable individuals to live and participate successfully in their community. At the center of each this approaches is Person-centred (or first) planning. Person-centred planning is a process through which all aspects of the participant’s life are considered. The participant determines what is meaningful to her. Decisions may range from day-to-day concerns such as what to have for breakfast to larger, more encompassing decisions as where to live and work. The participant has the right to decide and direct the process….The service provider has the responsibility to respect participants’ decisions and to provide support. (Comprehensive Personal Planning and Support Policy, Page 11) * For more information about person centered (first) planning contact refer to Comprehensive Personal Planning and Support Policy developed by SARC, SACL and Saskatchewan Community Resources Person first planning relies on: Persons with cognitive disabilities are entitled to be seen as a person not a disability are entitled to respect and dignity are entitled to a personally satisfying quality of life are recognized as valuable contributors and members of society are recognized as having a disability that is lifelong. are supported in a way that is person-centred and looks at needs from a holistic perspective As Mentors, we must: recognize the individuals strengths and challenges recognize the need for interdependence foster inclusion in the community recognize the need for the individual’s consent recognize the value of caregivers and support persons in the development and follow through of support plans 8 be culturally sensitive recognize potentially inappropriate behaviour as disability based and resist internalizing such behaviour B. Working as Part of a Team While mentors work independently, they do not work in isolation as they are part of the individual’s team of support. Mentors provide the hands on support for the team, becoming a stable and consistent person in the individual’s life. Through this supportive relationship, the role of mentors is to focus on the goal attainment as identified by the support team. Goals can evolve as the circumstances the individual is facing change; however, how and why the goals are changing need to be reviewed and agreed upon by the support team as a whole. As a mentor you are most likely working as a self-employed individual. Your contract may be monitored by an agency, a community-based organization, or a parent/caregiver of the individual involved. As mentorship falls into the category of an unmet need for most individuals with a cognitive disability and especially those with FASD, your wage will most likely come through the Cognitive Disability Strategy (CDS). See Section 5 for a discussion of the CDS. In most cases a support team – that can consist of family members, a CDS representative, school, outreach workers, counselor, community health nurse and any other people who are providing services and/or are important to the person you are supporting – will already be in place as will be a support plan. The role of the support team is to plan, in conjunction with the individual, supports that recognize his or her spiritual, cultural, emotional, social, physical and intellectual wellbeing. The expectation is that the support team meets regularly (depending on your mentee this may be monthly, annually or bi-annually) to monitor how the plan is working and revise it as necessary. You may be asked to attend some or all of these meetings as you are ideally one of the people who have the most contact with the person being supported. There are a variety of reasons why you may not be required to attend some team meetings, ranging from the number of support hours available, to the content of the meeting. Extended community (circle of support and negative peers) Ideally the individual who is being supported has or will develop an circle of supportive people—friends, family, co-workers, colleagues from recreation groups, so that s/he is included in a caring community – formal and informal supports. However, for many persons with a cognitive disability, such as FASD, this is not always the case. In some instances the support group may consist of members who are facing burnout as the result of the individual’s intensive needs. In other situations, the support may include peers who are not a positive influence. Mentors have a vital role to play in helping the mentee: maintain existing relationships, develop new relationships and to identify and navigate unhealthy relationships. 9 C. Individualized Support Plan How does a mentor decide what to do? Pre-determined goals are established by the support team. The plan will depend on several factors; the interests, strengths and deficits, personal goals, their needs as well as potential mandated services (justice and addictions). You can help your mentee by: Accessing existing services, helping them to make and keep appointments, and planning transportation. Advocating on behalf of the person you are supporting and helping the individual to advocate for themselves. Help others to understand about cognitive disabilities, and why things may need to be adjusted to accommodate the supported person. Suggesting creative solutions to obstacles and problems, and simplifying decision making. Fostering a supportive and encouraging relationship in which the person being supported can safely have new experiences, learn and make decisions and mistakes. Making regular connections with others to foster the development of a natural, extended community. Your role in the plan The support that the mentor provides must be flexible and based on the needs of the individual receiving support. Supporting the decisions and goals of the individual and support team can be based on three questions: Is the individual going to be safe? (What is the risk to them or others and is the risk manageable by the individual?) How will this activity improve the individual’s quality of life? Can it be done within the individual’s current level of ability? (economically, physically and mentally) If not, how will activities be adapted? 10 Example: An individual has expressed the need to get a library card. He or she wants to read or borrow movies. Asking the three questions may help prioritize this goal and how to incorporate it into the person’s life. 1. Is it safe? Does the individual exhibit behaviour that can be unsafe to themselves or others? How will they get there (bus, car, walk)? Could they get lost? Do they dress appropriately for the weather? What are the risks at the library? Is it accessible? 2. Will this activity help to improve quality of life? The library is a source of free activities in the community. Is the interest in reading being met? Is the environment quiet or loud? How will this person react to this environment? Is it a daily activity of life? Is this a new experience—has she or he been to a library before? Can this be used to develop or help with other goals? 3. Can the goal be accomplished given the individual’s current level of ability or do you need to get to know him/her better first before you can decide that? Is the goal realistic for the individual? What is the cost? Is there a transportation plan? Has the person had past negative experiences with the library? Will the individual remember to return borrowed items? Is there a good chance for success? What steps need to be taken to prepare the individual for the library? How do you help the individual understand his or her abilities or needs? In answering these questions you may find that the person needs more help with utilizing the library than previously thought. As goals are decided and planned for, they will need to be prioritized based on individual need, desire and skills. If you are unsure about how to plan for a specific goal, remember the support team is there to assist you! 11 Getting to know the individual An understanding of the strengths and interests of an individual are important to the development of appropriate and successful plans for activities and to developing a daily routine. The following worksheet will help you to begin to know the person you are supporting. You must also be aware of challenges and situations that “trigger” undesirable reactions and behaviour. You can explore and record these things and add to them over time as you learn more about the person you are supporting on your mentoring journey. Family members and others in the support circle may also have suggestions that can be included here. Strengths, Interests and Challenges Be sure to make copies of this worksheet if you are or will be supporting more than one individual. The person I am supporting is good at: And has the following skills and interests: There are some challenges in the following areas: I will meet these challenges by: The person I am supporting has other significant, supportive people in their life: Personally: Professionally: These are the activities that we can enjoy together: Some of the situations and activities we should avoid are: 12 D. Establishing Boundaries Before entering into a mentoring relationship, you need to think about boundaries within the relationship that are appropriate and inappropriate. Questions may include: Q. What parts of my life am I willing to share? A. You can share relevant experiences (such challenges you’ve had with employment). But be careful not to give any identifying information (where you worked and/or co-workers’ names). Q. Can the person I support know my phone number? A. Yes he or she will need your phone number to contact you. However, you need to establish appropriate times to call. Providing only one option such as a cell phone or home phone number would be the best. Q. Will my mentee and I be connected on social media? (Facebook friends or follow each other on Twitter) A. This is a serious and in depth discussion that needs to be had with the team to determine if social media is an appropriate means of communication. In some instances when a client has no other means of communication, it may be necessary to connect with that person via social media. But remember it’s a professional relationship and social media outlets are normally personal in nature. Q. My mentee needs bus fare but does not have any money. Is it okay to give him or her money? A. It is understood that sometimes we may want to help people financially, but doing so blurs the line of your professional role. It is not appropriate to donate money, food, clothing or other material possessions to your mentee – rather work with your mentee to access community services on his or her own (i.e.) Salvation Army, Food Bank, Dress for Success, discounted bus pass programs, etc. Q. Can I drive my mentee to appointments outside our designated meeting times? A. No. Transportation is pre-determined according to the schedule established in the plan. Your role is not to provide transportation to other areas outside of the pre-determined goals. These are important considerations and decisions that need to be made before you begin to work with the individual. Mindfulness is recommended in all these areas, especially until you have become well-acquainted with the person you are mentoring and their support circle. If you are ever uncertain whether or not a particular boundary is being crossed, be sure to consult with the support team. 13 It is important to remember that the mentor relationship is a professional relationship, and with that comes professional boundaries. It would be inappropriate to socialize at a bar together, loan money to each other, develop a dating or sexual relationship, etc. Taking calls from your mentee late at night or doing tasks unrelated to your contractual obligations/goals are examples of situations in which boundaries have been crossed and are not acceptable. You must also accept that mentors cannot be all things to the persons they are supporting, and cannot play all the vital roles It is necessary to accept that their lives are separate from yours, and to maintain that separation. This is an important consideration in maintaining your own health, perspective and avoiding burn-out. E. Reporting and Confidentiality Simple record keeping is essential. You must record your activities and their outcomes as reminders of what was initiated and what progress was or was not made. Your records may also provide information about behavior patterns that may assist you to better support the person you are mentoring. As well, it is important to keep records that outline when specific activities took place, the length of time you spend with the mentee, how much mileage was used for the particular outing to ensure you receive the correct payment for your services. Information must be kept confidential. Information can only be released to support team members or others identified on a release of information signed by the mentee. It is important to remind the mentee that the information they share with you may be shared with the team, and to let them know what information you are sharing. This provides the mentee with an opportunity to clarify or add to the information and the opportunity to become part of the conversation. Some guidelines to assist you with record keeping: Records should be brief and restricted to essential information. Records should be kept in a safe, secure place, in your home if necessary or in an office. You need to make a clear distinction between recording events and recording behaviours and judgments of behaviours. *A variety of record keeping forms can be found in Part 4 Questions to think about: Are you writing comments that you do not want anyone to see, that you would not feel comfortable making to the team? 14 Do your comments reflect negatively on the individual or do they provide a way to think about the individual in a positive light and point the way to creative solutions? How would you feel if these comments were made about you, or someone close to you? The information recorded should never be written in a way that violates the person’s right to privacy and respect. As previously explained, as a mentor it is part of your job to learn and understand the reasons behind undesirable behaviours and devise ways to improve them. “Negative behaviours” can be a reflection of your mentee’s brain based disability, understanding underlying causes of behavior is the answer to appropriate accommodations and successful goal attainment. Mentoring as a long-term responsibility As mentioned at the beginning of this handbook, it is very important that you take your role as a mentor seriously. Individuals living with cognitive disabilities, especially those with FASD, often experience trust issues. In some cases you might be one of a small group of trusted support people an individual trusts. As such, you cannot take for granted the impact you have on that person. When you decide to take on the role of mentor, you are in effect agreeing to build a professional partnership with your mentee. What that person needs most in his or her life is a consistent support provider who can be relied upon. Regular and structured support is a necessity for many individuals with cognitive disabilities. Building relationships and trust is not an easy task for many individuals with disabilities. It is important to consider your own goals and current commitments prior to engaging in the relationship to prevent any unnecessary relationship breakdown or mentor turnover. F. Managing Stress Supporting persons with cognitive disabilities can be rewarding, but it is also challenging and stressful. It is important to plan for stress management. How do you deal with stressful moments in other aspects of your life? Taking a deep breath? Finding the humour in the situation? What are your strategies for dealing with stress on a regular basis? Consider some of the below examples: physical activities yoga or other relaxation techniques music talking with a member of the support team enjoying a comedic television show or movie 15 G. Mentoring Examples The support of a mentor can open up many avenues for persons with cognitive disabilities, many of whom face numerous obstacles in achieving their personal goals on their own. A mentor is first and foremost a support person who is committed to the growth and well-being of that person’s mentee. Mentors support and assist in a variety of ways, including providing activities that promote learning and ways in which to be more independent. It is important to remember that assisting individuals does not mean doing the work for them. Rather, mentoring is about working alongside a mentee by demonstrating how things are done, answering questions and providing support when needed. Consider some examples: Instead of going to a mentee’s home and cooking for him or her, show that individual the steps of how to cook a particular meal. Remember to include each specific step such as; finding a recipe, making a list of groceries needed, budgeting, shopping for and purchasing those groceries, etc. *As a note of caution, you will have to take into account the functional level of the person you are supporting when considering cooking methods and the complexity of the recipe* If your mentee enjoys playing a particular sport, don’t simply go to the park and play the game with him or her; research and find out what kinds of nearby community leagues and activities are available and suitable for the person you are supporting. From there, you and your mentee can take the steps necessary to sign up for a league or drop-in activities. The main goal is that the person you are mentoring is learning to play and participate with others on his or her own while developing improved social skills. Regular activities for mentees where positive relationships may be developed with others, thereby creating a natural circle of support, are particularly encouraged. Celebrating individuals’ abilities and successes It is very important to understand that individuals with cognitive disabilities face challenges that are hard for some people to understand. What might seem easy and obvious to one person could be confusing to another. So when you’re looking at the plan for the individual you are mentoring, you must learn to celebrate each success, no matter how small it might appear. Consider the following example: An individual living with fetal alcohol spectrum disorder (FASD) might walk outside in -30C weather with nothing but a T-shirt and jeans on. Due to the nature of his or her disability, the ability to feel sensations such as cold may be affected. One of the goals for the individual you are supporting could be to ensure he or she gets better at wearing proper clothing for various weather conditions. If you’ve helped develop a technique such as visual prompts that would ensure he or she remembers to wear a warm coat in cold climates then you should celebrate the success with that individual. 16 Part Two Disability Specific Information 17 1. Fetal Alcohol Spectrum Disorder (FASD) What is FASD? Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term outlining a range of disabilities that can occur in children, youth, and adults when alcohol is consumed during pregnancy. It is a lifelong, brain-based, and often invisible disability. FASD is a spectrum disorder because there are no two people with FASD who are affected the same. Each individual with an FASD is unique and has different strengths and abilities. The diagnoses within the spectrum of FASD include: Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Birth Defects (ARBD) and Alcohol Related Neurodevelopmental Disorder (ARND). The difference between the diagnoses is that different criteria have to be met in the areas of facial characteristics (examples include a flat philtrum, thin upper lip and smaller eye openings), growth deficiency and central nervous system damage. According to the Public Health Agency of Canada (PHAC), approximately 9 in 1000 live births are affected by alcohol. This is likely an underestimate because of the lack of diagnosis of FASD. The lack of diagnosis is due to the invisibility of the disability along with the shame and stigma about drinking during pregnancy. Individuals living with FASD are often misdiagnosed with other disabilities, such as Autism Spectrum Disorder, Schizophrenia and Attention Deficit Hyperactivity Disorder. FASD is caused when a mother consumes alcohol while pregnant. Alcohol is harmful because it is a substance called a teratogen. Teratogens cross freely between the mother and her baby and can cause damage to a growing fetus by causing damage to the baby’s brain and central nervous system. It is important to remember that no mother drinks during her pregnancy to harm her baby – every mother wants their baby to be healthy. Some mothers may not know they are pregnant when they drink or others may be struggling with addictions, violence, trauma, lack of support or they may have an FASD themselves. 18 Primary Disabilities Primary Disabilities are directly caused from the prenatal alcohol exposure. The primary disabilities fall under the following four categories: Physical, Cognitive, Behavioural and Sensory. 1. Physical: Prenatal exposure to alcohol can affect how a body grows and develops. People with FASD can have differences in how their bodies are formed and how they move. Examples of physical disabilities include: slow to meet developmental milestones problems with fine and gross motor control – things like throwing and catching a ball, holding a pencil, hopping on one foot, riding a bike poor balance and coordination - clumsy, bumping in to things lower height or weight auditory impairments weak heart, frail bones, and other body system abnormalities 2. Cognitive: Cognitive functioning refers to intellectual tasks like thinking, reasoning, and remembering, which are crucial in our everyday functioning. People with FASD can have trouble with many cognitive tasks. Examples of cognitive disabilities include: difficulty with memory confabulation – filling in gaps in memory with storytelling slower to process information short attention span impaired executive functioning (prioritizing, predicting outcomes) difficulty setting and reaching goals problems generalizing from one situation to another problems connecting cause and effect poor receptive language skills trouble understanding abstract concepts such as time, money, math may have lower IQ perseveration—intense focus on one concept or idea 19 3. Behavioural Disabilities: Your brain controls your behaviour in social interactions like conversations with friends, laughing at jokes, or using body language to communicate. Individuals with FASD may seem to display strange or inappropriate behaviours because their brains do not process other people’s actions and words in the same way. Research has found learning and behavioural differences between people with FASD can be related to their developmental age which is also known as Dysmaturity. Dysmaturity is when someone’s developmental age is younger than their chronological age, they may act and think younger than they are. In order to be appropriate and effective, expectations need to be based on developmental level rather than chronological age. Understanding a person’s developmental age can help us to better understand the behavioural symptoms of FASD. Other examples of behavioural disabilities include: problems with social skills and interpersonal skills trouble reading social cues impulsive actions mood swings inflexibility lack of inhibitions reacting poorly to changes in routine poor understanding of ownership poor understanding of personal space poor ability to express and/or understand a range of emotions repeated mistakes vulnerable to peer pressure easily overwhelmed grandiose or unrealistic expectations 4. Sensory Disabilities: Every day your senses take in a huge amount of information from your environment. Receiving and interpreting this range of information is called sensory processing. Because the brain takes in so much information, the sensory system works best when all senses work together. This is called sensory integration. 20 Prenatal exposure to alcohol can damage the central nervous system and cause sensory processing or integration problems. Generally, this looks like over - or under-sensitivity in taste, smell, touch, hearing, sight, vestibular input (movement sensation) and/or proprioception (a sense of where your body is in relation to your surroundings). This can result in sensory seeking behaviours such as unusual hyperactivity or avoidant behaviours such as shutting down to any responsive actions. Examples of Sensory Disabilities are: Over Sensitive Examples: low pain tolerance, easily distracted, avoids movement, speaks softly, overwhelmed in noisy spaces, over active gag reflex Under Sensitive Examples: high pain tolerance, clumsy, craves fast vigorous movement, speaks loudly, craves touch, tactile learner, poor sense of smell Secondary Disabilities Associated with FASD Secondary disabilities are not caused directly by prenatal alcohol exposure but develop later in life due to an individual with FASD not being a “good fit” in their environment. It is important to remember that with the right support, secondary disabilities can be prevented. Secondary Disabilities can include: mental health issues substance use & addictions trouble maintaining a job eviction and homelessness trouble with friendships and relationships trouble with healthy sexuality trouble with the law (as either victim or offender) difficulty parenting their own children FASD is a life-long brain based and often invisible disability. There is no cure but there is support and resources available. Individuals with an FASD Can and Do Succeed! 21 Strategies for Success Patience - Individuals with FASD need more time to learn some things. You can help by being patient and explaining things multiple times. Individuals with an FASD have been referred to as “10 second people in a 1 second world”, because they tend to process information slower. Think Younger - People with FASD usually function cognitively younger than their chronological age. When working with an individual with an FASD it may be necessary to assume that they are half of their chronological age. For example if you are working with an individual who is 22 years old they may be at a developmental age of an 11 or 12 year old. Simplicity / Consistency / Concrete - Use clear and concrete words in short sentences. Say exactly what you mean with fewer words and use consistent words. For example, a jacket is a jacket not a jacket one day and a coat the next. Always tell the individual what you would like them to do, not what they cannot do. Routine / Structure - Provide a predictable consistent structured routine. Individuals with FASD can struggle with transitions and change so by keeping the routine as consistent as possible it allows the individual to know what to expect next. Routine can also help an individual offset their memory deficits. Rules / Expectations - Expectations and rules need to be simple, developmentally appropriate and explained in a way in which the individual understands. They may also need to be explained in different environments as individuals living with FASD often struggle with the ability to generalize. For example, a high school student with FASD may not understand that the rules in the library are the same rules in their home room. Comprehension Checking - Check to see how much information the individual you are working with understands. Having them repeat back to you what you said does not mean they understood. Have them explain back to you in their own words what you told them. Group Settings - An individual with FASD may not do well in group settings as they often struggle with social skills and can become easily overwhelmed. If you have an individual who is struggling, allow the individual to do a different independent (supervised) activity. Practice Borrowing – Individuals need help to learn what borrowing is and how it looks. Often individuals with an FASD exhibit behaviors that are mistaken as stealing as they struggle with ownership and impulsivity. Practicing borrowing will give individuals with FASD skills to potentially avoid situations in which their behavior could be mistaken as stealing. Strength Based Approach - Build on individuals strengths. Do not get caught up in their deficits. Remember success looks different to everyone so always celebrate the individual’s success no matter how big or small it may seem. 22 2. Autism Spectrum Disorder The following information was provided by Autism Services of Saskatoon. What is Autism Spectrum Disorder? Autism Spectrum Disorder (ASD) is a complex, lifelong neurodevelopmental disorder that usually presents symptoms within the first three years of life. The primary resulting deficits observed are in the in the areas of social interaction, communication, perception and cognition. ASD is best described as a spectrum disorder in that the characteristics of ASD can be reflected in a variety of ways, across the spectrum. Individuals with ASD can exhibit any combination of behaviors or symptoms in any degree of severity, from mild to severe. Therefore, two individuals diagnosed with ASD can be dramatically different from each other. There is often an uneven profile of skills scattered across various developmental areas. As of May 2013, the diagnostic criteria for Autism Spectrum Disorder was revised in the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), a publication released by the American Psychiatric Association. * According to the most recent diagnostic criteria, an individual diagnosed with ASD will exhibit persistent impairments in the following areas of development: Social Communication and Social Interaction: The impairment includes both spoken language and non-verbal skills (gestures, facial expressions and imaginative play). Deficits in communication may range from little to no verbal speech, to difficulties with speech production and/or conversational skills. They will also demonstrate deficits in non-verbal communicative behaviors to support social interaction such as abnormalities in eye contact and body language, difficulties in the understanding and use of gestures, and limited or lack of facial expressions. Deficits will also appear with social reciprocity (e.g. abnormal social approach, lack of normal back and forth conversation etc.) and in the developing, maintaining and understanding of social relationships (e.g. difficulties in shared and imaginative play, apparent lack of interest in peers etc.) Restricted, repetitive patterns of behavior, interests: Examples include stereotyped or repetitive motor movements (e.g. hand flapping, finger flicking, rocking etc.), insistence on sameness in daily routine, highly restricted and fixated interests that are abnormal in intensity and focus, hyper- or hypoactivity to sensory input or unusual interests in sensory aspects of the environment (e.g. abnormal pain response—ranging from indifference to painful stimili or overly sensitive to normal touch, excessive touching or smelling of objects, fascination with lights or movement, etc.). Symptoms must be present in the early developmental period (but may not become apparent until social demands exceed limited capacities, or may be masked by learned strategies later in life.) They must also cause “significant clinical impairment in social, occupational or other important areas of current functioning.” 23 The symptoms are not better explained by an intellectual disability or global developmental delay. The diagnosing physician is also to specify whether ASD is present with or without an accompanying language or intellectual impairment and what the severity level is based on descriptions in a table from 1 – 3, with a score of 3 being the most severe and considered requiring the most support. In the previous edition (DSM-IV) Autism was listed under the Pervasive Developmental Disorders (PDD) umbrella and included Aspergers Syndrome, Childhood Disintegrative Disorder, Rett Syndrome and Pervasive Disorder—Not Otherwise Specified (PDD-NOS). The DSM-V has kept Autism Spectrum Disorder as a diagnosis, removing all other aforementioned diagnoses and added Social (Pragmatic) Communication Disorder (SCD). SCD is considered to be a similar but separate diagnosis from ASD. The main difference being that deficits in communication and social interaction are mainly observed in the absence of the rigid stereotypical behaviors and/or unusual variances to sensory stimuli. In the new diagnostic criteria it is advised that individuals with a wellestablished DSM-IV diagnosis of autistic disorder, Asperger’s disorder or pervasive development disorder not otherwise specified should be given the diagnosis of ASD. Other associated features: Other symptoms and issues may be observed in an individual with ASD but are not considered as necessary to be present under the diagnostic criteria. These may include difficulties with day to day self-care (e.g. eating, sleeping, toilet training, grooming etc.) unusual fears, cognitive deficits/learning difficulties, aggressive behavior towards themselves (self-injury) or directed at others, tantrums/emotional outbursts (“melt-downs”). These concurring features are often related to the primary deficits of social communication and restricted, repetitive behavior patterns. Again it is important to remember that the expression and experience of the symptoms and characteristics of ASD can vary significantly. Each person with ASD should be viewed as the unique individual that they are. Also due to the very recent change in diagnostic criteria for ASD it is quite possible that many if not most of the individuals seeking mentorship will be more familiar and comfortable with the older diagnostic “labels” of Aspergers Syndrome, “Aspie,” Autistic etc. Sensitivity and respect should be shown for their preferences. Also much of the information resources available in print and online may be using the old name references so it is important to remember that the information, whether under Aspergers, Autism, etc. is essentially referring to the same disorder. Incidence **The latest statistics indicate that as many as 1 in 88 children are affected by ASD, an increase of approximately 600% in the past 10 years. ASDs are almost 5 times more common among boys (1 in 54) than among girls (1 in 252) Cause Exactly what causes ASD is still unknown. Current research suggests that a predisposition to autism might be inherited. Researchers have not found a specific “autism gene” but instead a nonspecific factor, which may increase the likelihood of 24 having cognitive impairments. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. Researchers have also found neurobiological differences in the brains of individuals with autism. The current theory is that ASD is caused by a combination of “risk genes” and environmental factors in the early brain development period. Learning Styles of People with Autism People with autism may have: information processing difficulties trouble with theory of mind--taking the perspective of another person inflexibility in their thinking (“black and white” thinking) difficulty with transitions or change, causing stress have trouble focusing their attention and staying on task sensory integration difficulties that affect their perceptions and ability to sort through various stimuli in a meaningful way. a strong need for structure and routine in their daily lives Visual Strategies Many individuals with ASD may be described as visual learners as well as concrete learners. Visual and step-by step strategies are often used to help individuals with ASD better understand a particular situation or what is expected of them. These tools appeal to the often concrete way a person with ASD learns. Visual strategies are often used as a way to facilitate communication to those with limited or no speech. There are different kinds of visual strategies, and they can be used individually or used in combination. 1. Picture Symbols - Hand drawing or computer generated. Symbols can be taped to desks, objects, used on a ring for easy reminders, or organized in a binder with Velcro strips. Children with ASD who are non-verbal or with very limited verbal capacity can learn to communicate using alternative or augmentative communication supports, such as Picture Exchange Communication System (PECS). Children can also use other modified communication styles in order to gain a greater understanding and functional use of social communication. 2. Choice boards - Help to give the individual a sense of control and focus on what choices are and are not available in a certain situation or venue. A menu of items provided for the individual to choose from. Once an item is chosen, it may be removed. 3. Visual Schedules - Placement near the child for quick reference (ex: school desk or fridge at home). Helpful for transitions from one activity to another, a useful guide for the individual with ASD is to visualize what is expected of him/her. 4. Social Stories - A short, simple story that describes a given situation based on relevant cues in the situation, offering appropriate responses. Social stories provide 25 accurate information regarding what is occurring in the situation and why. They are used to teach new routines, behaviours, and rules, or serve as a reminder. They help prepare a child for new or unexpected changes in routine, and help a child to adjust to unfamiliar events. Tips for Interacting with Persons with Autism Assist with transitions (e.g. give verbal reminders based on time “5 more minutes” or sequencing, “First we do _____, then we do _______). Make use of the clock, often the more visual the representation of time the better. Give clear choices suitable to the situation and venue. Use visual cues (social stories, written or illustrated rules, picture symbols, “5Point System” etc.). When making a request or asking a question allow the individual extra time to respond if they have demonstrated information processing challenges. Show the person what you want them to do (e.g. by modeling or by hand over hand, etc.) Praise all efforts in a manner that they will understand and appreciate (e.g. verbally, smile, high-fives, stickers, small expected reward etc.). Never assume that the individual understands what you are trying to communicate to them because he/she says they do but their behavior suggests otherwise. Monitor your own language, tone, rate of speech and behaviour especially when the individual is showing signs of escalating anxiety or distress. Individuals with ASD can often be very sensitive to perceived distress in others Communicate with parents and primary caregivers whenever possible. Remember that undesirable and difficult behaviors are often the result of sensory overload, a sudden and unexpected change in routine or any other situation that may be causing anxiety and confusion. It is helpful to think of the behavior of an individual with ASD as a mean of communication instead of willful noncompliance. Do not make promises you cannot keep. This will often be interpreted as an unwelcome change in expectation. Have patience, with the person with ASD and with yourself too! 26 3. Intellectual Disabilities The following information was provided by the Saskatchewan Association for Community Living (SACL). According to the Canadian Association for Community Living: “Intellectual disability is a term used to refer to the challenges that some individuals face in learning and often communication. These challenges are usually present from the time they are born or from an early age.” It is estimated that approximately 0.5 – 1% of the population has an intellectual disability. The SACL promotes and supports the following basic principles: Individuals of all ages with an intellectual disability are citizens of their country, entitled to consideration, respect and protection under the law. Individuals with an intellectual disability shall live, learn, work and enjoy life in the community and shall be included and valued. Individuals with an intellectual disability shall be provided with all supports necessary to realize the fullest use of their abilities. Intellectual disability shall not justify any form of discrimination. Gentle teaching is one approach caregivers and/or mentors can utilize when supporting individuals with intellectual disabilities. Gentle teaching is based on a psychology of human interdependence. The four pillars of gentle teaching include: Safe Loved Loving Engaged To learn more visit saionline.ca or www.gentleteaching.com. 4. Acquired Brain Injury (ABI) The following information was provided by Radius Community Integration Services. Acquired brain injury is damage to the brain that occurs after birth. It is not related to a congenital disorder, a developmental disability or degenerative disease. The term does not refer to brain injuries caused by birth trauma, but rather brain damage caused by car accidents, strokes, falls, aneurysms or other trauma. 27 Part Three Legal Considerations 28 Knowing your rights and responsibilities Now that you’ve decided to become a support worker, it is important to have some basic knowledge regarding some of the legal issues surrounding your job. Working with individuals with cognitive disabilities is a serious profession. You might find yourself in situations where an awareness of legal issues regarding yourself and/or your mentee comes into play. You also need to be aware of what it means to be “self-employed” and what is required of you regarding tax purposes. 1. Child and Family Services Act If you have any safety concerns for any children under the care of your mentee, please consult Saskatchewan’s Child and Family Services Act at http://www.qp.gov.sk.ca/documents/english/statutes/statutes/C7-2.PDF. In your position as a support worker, you should always be aware of any potential harm and/or dangerous situations your client is placing on any family members. Though your role is to provide support and guidance to your client as well as build trust with that individual, the safety of everyone in society – especially children – is of the utmost importance. According to the Child and Family Services Act: “The purpose of this Act is to promote the well-being of children in need of protection by offering, wherever appropriate, services that are designed to maintain, support and preserve the family in the least disruptive manner.” Duty to Report – the Act stipulates that “every person who has reasonable grounds to believe that a child is in need of protection shall report the information to an officer or police officer.” Duty to Investigate – “Where a report is made…an officer or peace officer shall investigate the information set out in the report if, in the opinion of the officer or peace officer, reasonable grounds to believe that a child is in need of protection.” 2. Confidentiality As a support worker you will likely come to know very personal and confidential information about the person you are supporting and possibly that of others close to them. This information must be kept confidential. While it is often helpful to talk about situations with a friend or colleague, honouring confidentiality for the person(s) you are supporting is crucial. This means that information about the person you support can only be discussed with someone who is included on a consent form for information sharing or the discussion must be in very general terms that do not reveal any identifying information. There are two circumstances under which confidentiality may be broken ethically. 29 First, when there is obvious risk of serious harm to the individual you are supporting, yourself or to someone else. Second, when there is a legal proceeding and any reports and records you have are requested by the court. 3. Safety Safety is top priority in the mentoring relationship, both for yourself and the person you are supporting. However, safety is also based on good judgment that comes from using common sense, forethought and good planning. As you learn more about the abilities and interests of the person you are supporting, you will be in a better position to assess the safety implications of various situations. Begin your relationship by going to places and doing activities that you judge to be quite safe. Make sure not to bring valuable items with you until you better understand your mentee’s disability. Gradually broaden the scope as you get to know each other better. Record what you learn, so that you can refer to past experiences, and look for patterns in the situations that do and do not go well. Think about safety in terms of prevention of unpleasant or dangerous outcomes. Because it is not possible to prevent every undesirable event, planning to minimize harm is also important. Information provided by the supported person, his or her family or long-term friends will be an important starting point. What are the strengths and the challenges of the person you are supporting? And what are the safety implications in terms of social situations transportation employment food shopping and preparation money management medications alcohol or drugs family, friends and acquaintances Safety issues exist for the mentor as well. It is important to know the background of the person(s) you are supporting, what is their baseline behavior, any known triggers and whether there is any history of violence or drug use. In addition to knowing their social history, it is important to be informed of effective interventions and strategies previously 30 used. If so, what measures can you take to keep yourself safe? Some questions you may ask include: Are there family members or friends that may pose a risk to either of you? What plans can you make to keep yourself safe? Do I have the most up to date education and training on various disabilities and medical conditions? Will you be going into the homes of persons you support? Always trust your instincts about unsafe circumstances and make or change your plans accordingly. Before each outing or activity, think about: possible risks the strength of each risk the risks that carry the greatest likelihood of happening which risks pose the most serious outcomes the likelihood of a serious negative outcome being so great that the outing or activity should not be undertaken making other plans when there is a risk ways to deal with these risks, and select the strategies that are most suitable and effective to create a plan if the level of risk is acceptable. Questions to think about: What are some activities and places that the person you support is interested in going to? What advice do family and friends have about these choices? What are the triggers that are likely to lead to unstable or unsafe situations? What can you do to avoid the triggers, risks that may be encountered? What can you do to manage various situations that may occur? If necessary, is there anyone you can call on to help you? What types of situations can you manage on your own, and what are the situations where you may need some help? 31 4. Emergency contacts and information Be prepared should an emergency occur. Make a compact, sturdy list of phone numbers, personal health numbers, or any other important information to keep with you at all times, perhaps on a laminated piece of paper. Every individual you are supporting should carry personal identification and, where applicable, a medical alert bracelet (indicating epilepsy, diabetes, allergies etc.). A card carried in the individual’s wallet indicating other important information might be helpful and should contain the following: name, address, phone number Social Insurance Number medical number 24-hour emergency number Disability Support Person Your emergency plan As you get to know the person you are supporting you will become aware of some of the risks that may be encountered. Have a plan in place if you feel you need it for the individual. The plan may exclude particular activities if you feel the risk outweighs the benefits. For instance, you may feel it is not safe for you to drive the individual in your car. Public transport may be the more appropriate alternative. The following list of possible situations is adapted from Better Safe…, (Graff, 2003). Accidents: Car accidents—if you will be providing rides for the person(s) you are supporting, do you have appropriate insurance coverage? If you will be riding with others, do they have adequate insurance to cover you? *CDS does not provide car insurance (or any other insurance or benefits) should any damage or injury occur. Serious injury to you or the person you are supporting: Who needs to be contacted in case of serious injury? Do you have the name and phone number of their doctor? Do you have their health insurance number? Are you aware of allergies? Who needs to sign consent forms? Confidentiality: The information that you as a mentor receive about a person that you support is confidential. Highly personal information is shared with the team so that they are able to comprehensively support the individual. Such information should only be shared outside of the support team if there is a risk of harm to the individual themselves or to anyone else (suicide, threats, abuse). 32 Theft – Be careful to not bring any items of value to you when first meeting with your mentee. Once you gain a better understanding of his or her disability, you may reconsider this policy. Abuse (physical, emotional, sexual, or financial) 5. The Health Information Protection Act Quick Reference Sheet The Health Information Protection Act (HIPA) is Saskatchewan legislation that identifies the rights that people have regarding their personal health information. The following is a reference sheet about for your information. The Health Information Protection Act legislates rights of individuals and obligations of the “trustees” in the health system with respect to personal health information. A trustee includes persons or organizations prescribed in the Act or regulations who have custody or control of personal health information and includes, the Ministry, physicians, regional health authorities, the Saskatchewan Cancer Agency, ambulance operators, health professionals to name but a few. Please see clause 2(t) of HIPA for a complete list of trustees. The basic goal of the legislation is to provide individuals with certainty of protection for privacy of personal health information, while at the same time ensuring that information is available as needed to provide services and to monitor, evaluate and improve the health system in Saskatchewan for the benefit of individuals and the province. What the Act does The Act identifies a series of rights that individuals have in regard to their personal health information, including: the right to consent to the use and disclosure of personal health information except as otherwise authorized by the Act; the right to prevent disclosure of any "visionary" comprehensive electronic health records on Saskatchewan Health Information Network (SHIN); the right to access records about themselves; It establishes a common set of rules that emphasize the protection of privacy, while ensuring that information is available to provide efficient health services. It applies to all key stakeholders in the health system defined as "trustees" including: government institutions, regional health authorities and affiliates, special care homes, personal care homes, mental health facilities, laboratories, pharmacies, community clinics, the Saskatchewan Cancer Agency, ambulance operators, regulated health professions, and health profession regulatory bodies. 33 The Act applies to "personal health information" defined as information about the mental or physical health of an individual, which is identifiable to that individual. It does not apply to de-identified information, statistical or aggregate data, or administrative data contained in the health system. The Act applies to personal health information held by any trustee in Saskatchewan, regardless of format. All parts of the Act apply equally to all media including paper, microfilm, x-rays and electronic records. The Act identifies a number of duties trustees have to protect personal information including requiring that trustees comply with regulations regarding retention and safe disposal of health records. The Act requires a legal agreement between trustees and information management service providers such as SHIN, ISM or CGI. The agreement must address all aspects of the service provided to the trustee including ensuring protection for the information and clearly stating that the trustee retains all responsibility for decisions about the personal health information. HIPA provides rules for the collection, use and disclosure of personal health information. Specifically, it provides for disclosure with express consent for any reason, with deemed consent for limited reasons (mostly related to the provision of services), and without consent for limited reasons listed in the Act. Where consent is deemed to exist for the use and disclosure of personal health information, HIPA places additional responsibilities on trustees to ensure information is used appropriately and only as necessary to provide the care. Trustees are required to establish policies and procedures where consent is deemed to exist to restrict the disclosure of personal health information to only those people who need to know the information to carry out the purpose for which the information was collected. And in those cases where the trustee is a health professional the use and disclosure of personal health information by the trustee must be only within the ethical practices of the health profession. The Act legislates an individual's right to access information about themselves held by any trustee in the health system. It provides rules for amendments to that information contained in the records of a trustee. The Act names the existing office of the Information and Privacy Commissioner to handle complaints and monitor enforcement of the legislation. Section 63 of the Act places limits on a government's ability to make certain regulations by requiring significant consultations before they can proceed. Section 65 establishes significant penalties for offences under the Act. Individuals (including officers and directors of a corporation) can be punished by a fine of up to $50,000, one year imprisonment, or both. A corporation can be fined up to $500,000. 34 The Health Information Protection Act was enacted as of September 1, 2003. New regulations created under the authority of this Act called The Health Information Protection Regulations came into force on July 22, 2005. Complete legislation and other information regarding the Health Information Protection Act can be located at http://www.health.gov.sk.ca/ph_br_health_leg_hipamain.html 6. Self- employment If you are self-employed, you will be responsible for your terms of employment. You will also be responsible for basic benefits and paid your wage for hours provided only. The following information will help you through this process. Entering into an agreement Signed contracts are essential and provide the best protection of each party’s interests. However, verbal agreements are known to be used, especially initially when the mentoring relationship is being developed, and there may need to be adjustment in times or activities. Part 4 of this handbook includes sample contracts provided by CDS. As every situation, organization and region is different, the contracts will be different. You may want to consult a lawyer to ensure you understand the legal implications of what you are signing. Some things to consider when creating an agreement follow: What are your responsibilities regarding attendance at meetings? Who will provide supervision and support to you? What is the procedure if your mentee does not show up for a scheduled meeting? Who do you call if you are sick, encounter difficulties, etc.? What activities will you actually be paid for? Payment for attendance at meetings, including meetings with family members, making and receiving phone calls, attending training and other times when you are not actually spending time with the person you are supporting will need to be clarified. Will there be funds available to pay for recreation, transportation, mileage, light meals or coffee, or other incidental expenses? What is required for either party to opt out of the contact? Two weeks’ notice? One month notice? Who will the notice be given to? If a Criminal Record check or a Vulnerable Person check is required by the support team they can be obtained from the local police station for a fee, and take about three days to process. 35 Responsibilities that go along with self-employment As a self-employed person, responsibility for adequate insurance is up to you. You are likely to be providing transportation to the person you support, so ensure that your car insurance is adequate. Managing and keeping track of your time will be another responsibility. Scheduling will, of course, need to suit both you and the person you are supporting. Consistency in scheduling is very important for persons with cognitive disabilities. Simple record keeping is essential. You will need to keep two types of records, one to show accountability for income tax purposes, the other to keep track of activities. Income tax records would include the following: the hours you spend in your mentoring role for billing purposes expenses Part 4 of this handbook provides samples for keeping track of your time and expenses, and an example of a simple invoice that you may be required to submit to receive payment for expenses and your time. Remember to keep your own copies of any forms you submit for your records and income tax purposes. In addition, you will have responsibility for the safety of both yourself and the individual you are supporting. Please refer to the section on “Boundaries” beginning on page 11 of this handbook. Financial aspects of self-employment As a self-employed person you will receive the gross amount of pay agreed upon, no deductions will have been made for income tax, the Canada Pension Plan (CPP) or for Employment Insurance (EI) it will be your responsibility to keep track of all the money you receive and pay income tax and CPP you are likely to be required to submit CPP premiums and income tax on a quarterly basis, not just on April 30 when you must file your tax return there will be some expenses that you can deduct from your income for tax purposes as employment expenses which may include: o cell phone or land line charges o vehicle expenses such as gas, oil changes, maintenance and repairs, interest charges, insurance and registration fees o a portion of your house expenses if you use a portion of it for an office space, etc. In general, remember that only the portion of the above items that you use for incomeearning purposes are eligible as deductions from your income. More information regarding income tax and CPP may be found at http://www.craarc.gc.ca/menu-e.html. 36 Part Four Saskatchewan Cognitive Disability Strategy (CDS) 37 Full citizenship of persons with disabilities requires access to support and the elimination of barriers to service. (Federal/Provincial/Territorial Ministers responsible for Social Services 2000) The overall direction of the Cognitive Disability Strategy as explained In Saskatchewan, Communities Working Together, Saskatchewan’s Action Plan for Citizens with Cognitive Disabilities is described in the following fashion: [The strategy]… puts the needs of individuals with cognitive disabilities first. Understanding how disabilities impact individuals in their daily lives and tailoring services based on individual needs, rather than specific diagnosis, is a key focus of the strategy. (Government of Saskatchewan. 2005) 1. What is the Saskatchewan Cognitive Disability Strategy? A provincial government interdepartmental committee was formed in early 2000 to consider how to provide more appropriately for persons with FASD. This committee reached the conclusion that the gaps they were finding were there for all persons with a cognitive disability and that their discussion should encompass this larger group. The result was the document Communities Working Together, Saskatchewan’s Action Plan for Citizens with Cognitive Disability (Saskatchewan Government 2005). The intent of this document is to provide a framework for supporting persons with a cognitive disability who have significant behavioural and developmental challenges. The basic premise of the strategy is that communities already offer a variety of supports and services and that these existing services be explored before CDS funding is provided. Thus, the initiatives in the strategy are designed to respond to those needs which cannot be met through these existing supports and services. If a team can demonstrate that a gap in services exists, then CDS funding may be available. As most persons with FASD do not qualify for many of the services already provided, this group of individuals would be expected to comprise a high percentage of the individuals qualifying for support. Each region has some latitude in creating the process in which application for CDS funding are reviewed. However, approval for all CDS funding is made at the provincial level; the local regional committees do not make the final decision on approval but do make recommendations. 38 2. The Cognitive Disability Consultant A consultant is available to provide assistance in four areas: 1. Training; Community Capacity Building 2. Increased Awareness of the Cognitive Disability Strategy 3. Enhanced Consultation of Planning; support to the team if one is already in place or support to the individual in creating a plan 4. Behavioral Support/ Consultation The consultant can work with the team to provide suggestions on how to best support someone to be successful in the plan that has been developed, and can assist teams to develop the plan if necessary. The focus of the Cognitive Disability Consultant is to enhance the knowledge and skills of families and service providers in meeting the needs of persons with cognitive disabilities. 3. Process for applying for Cognitive Disability Funding CDS Intake Committee Each region has a committee who is responsible for reviewing all applications which come forward for funding from their region. The committee reviews the information provided to assist in the following areas: does a person meet the criteria for CDS, does the plan provided information demonstrating the unmet need does the plan provide enough information to demonstrate how the unmet need will be met how will the team measure if the plan will be successful in meeting identified goals and outcomes for the individual. The membership of the CDS committees represents a wealth of knowledge that covers many different service areas. This knowledge allows for sharing of ideas and resources in providing recommendations of how to meet unmet needs. It also provides a forum for the committee members to ensure that existing services do not exist prior to funding be recommended through CDS. Assisting an individual to access CDS funding *The team lead will initiate the application and the mentors’ role would be to be a part of that team and assist the team lead as needed 1. Meet with the individual to find out what the goals are and needs; create a plan with individual and their support team identifying the goals. 2. Explore what services and supports are available in the community. 3. If there are no existing services and supports to meet the need, contact regional CDS office to obtain an application form for CDS funding. Application process 1. Ensure the application form is completed in full. 2. Application is reviewed by the regional committee and recommendations made 39 3. If regional committee supports plan recommendations are sent forward to the province 4. Province reviews plan with recommendations from regional committee and decision is made regarding approval of the plan 5. Payment system is set up *approval of plan can take up to 4 weeks and set up for a payee can take up to an additional 4 weeks. The amount of funding an individual may receive depends on the level of functioning of the individual as assessed by the Daily Living Support (Skills) (DLSA) and the income of the family or individual. A copy of the notice of assessment is required for all applications unless the person is in receipt of SAP/SAID. The 5 criteria for CDS is as follows: The applicant must have: Significant limitations in learning and processing information. Individuals are limited in retaining knowledge, learning skills, making decisions, and communicating with others Behaviour challenges which result in limited inter-personal, social and emotional functioning Developmental challenges which limit capacity to adapt to daily living in areas such as self-care, independence at home, in the community at work or leisure Limitations and impairments that are persistent and long-term Have unmet needs 4. Individual Support Team This team consists of caregivers/friends/professionals who are involved with the individual with a cognitive disability. The cognitive disability Consultant can provide support to the team as needed. The suggested role of the Individual Support Team include the following: Contact individual or family to determine who should attend an initial planning meeting to review the identified unmet needs. Be a part of creating a plan to meet the unmet needs and in the process explore all existing services. Complete application for CDS benefits if the plan cannot be met through existing services. Be a part of the continued support in implementing the plan that has been created. Advocate for appropriate supports and services ***Please refer to the last two pages of this handbook for a listing of Regional CDS consultants and regional CDS map. 40 5. Forms, Contracts and Reports What follows is a sample of some of the contracts/forms you might be expected to fill out as a support worker. These are only examples as requirements change over time and vary from region to region throughout the province. If you have any questions regarding any CDS or other reporting requirements, you are advised to speak to your team lead and/or CDS regional consultant. 41 Support Worker Invoice Sheet MONTH/YEAR: ____________ *please complete in full INDIVIDUAL SUPPORTED: ____________________ NAME, PHONE # and BILLING ADDRESS: ____________________________________ _____________________________________ _____________________________________ DATE # of HOURS ACTIVITY MILEAGE EXPENSES TOTAL WAGES: TOTAL HOURS * $__ /HOUR TOTAL MILEAGE * $0.__ /KM TOTAL EXPENSES TOTAL TO BE PAID FOR MONTH $ +$ +$ =$ Report of events from the month (how the month went, what activities done, benefits for individual from the activities that were done, goals that were met/not met)… _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ 42 Sample Support Worker Agreement It is recommended that an agreement like this be completed to provide awareness and understanding between the team and the support worker/mentor. Please note, if you would like this sent to you through e-mail as an attachment so you can make adjustments to suite your individual contact please contact the Saskatoon Region Cognitive Disability Strategy office and we can arrange this. 306-477-4845 Period of Contract ________________________ Hours of Pay - this section should include how the person is going to get paid, the rate, when they will get paid, incidental costs, etc. Payments will be paid through invoice submission once a month. Invoice form will be provided to support worker/mentor. Once completed it is to be submitted to_______________ (identified team member) for review prior to being sent to the payment office. After team approval invoice can be sent to [email protected]. CDS regional office must have support worker/mentor name, mailing address and day time number prior to initial invoice submission so person can be set up on the computer as a payee. If provided at time of initial invoice submission this will delay payment. Minimum of ____ hours/week @ $_____ per hour Additional hours @ $____ per day may be requested. These hours may be at irregular times. Additional hours must be approved by _________________ (identified team member) prior to working. Incidental expenses are reimbursed for support worker/mentor expenses only. Support worker/mentor expenses will not exceed $_______ per month without prior approval from _________________ (identified team member). Receipts must be given for all expenses before they will be reimbursed. Mileage is paid at a rate of ________ per km. Termination of contract on either side requires 2 weeks written notice. Support worker/mentor is seen as being self-employed and therefor is responsible for looking into income tax regulations, and all other mandatory benefits. 43 Expectations – this section should include all information about what the worker will be doing. Support worker will meet with__________________ (individual) and persons involved in the care and vocational program to become familiar with the daily routine and to begin to understand strengths and needs. Support work will work with ___________________ (individual) on goals that have been identified in the support plan. As well will provide regular updated reports on success of meeting goals and teaching identified skills. Support worker will maintain communication with ________________ (identified team member) on at least a monthly basis to provide update on plan. Support worker will work with the team involved to implement and monitor a behaviour support plan if one is in place. Support worker will keep accurate records of hours worked. Support worker will meet with team as requested. Confidentiality of the family and individual will be respected. Signature of support worker ________________________________________________________________ Signature of person receiving the funds (if different from support worker) ________________________________________________________________ Signature of identified person for the team Signature of the individual who will be receiving the services and/or support (if applicable) This form is a sample only. It is not a legal document. It is provided to give you an idea as to what the expectations are. 44 Cognitive Disability Strategy Regional Map 45 CDS Regional Consultants Ruby Jones Keewatin Region Box 340 Ile a la Crosse, SK S0M 1C0 Phone: 306-833-3383 Fax: 306-833-2474 ruby.jones@[email protected] Mary Newton Saskatoon Region CDS 3031 Louise Street Saskatoon, SK S7J 3L1 Phone: 306-477-4846 Fax: 306-373-3070 [email protected] Crystal Peters Cognitive Disability Strategy Box 5000 LaRonge, SK S0J 1L0 Phone: 306-425-6671 Fax: 306-425-4515 [email protected] Tabby Chornoboy Saskatoon Region CDS 3031 Louise Street Saskatoon, SK S7J 3L1 Phone: 306-477-4845 Fax: 306-373-3070 [email protected] Charmaine Landrie North West Region c/o Bea Fisher Center Box 296 Lloydminister, SK S9V 0Y2 Phone: 780-875-3633 Fax: 780-875-6513 [email protected] Laurel Chambers – Intake Coordinator Saskatoon Region CDS 3031 Louise Street Saskatoon, SK S7J 3L1 Phone: 306-477-4847 Fax: 306-373-3070 [email protected] Shannon Gray Prairie South School Division 15 Thatcher Drive Moose Jaw, SK S6J 1L8 Phone: 306-631-5613 Fax: 306-694-4955 [email protected] Irene Bankam – Intake Coordinator Regina Region CDS – Ehrlo Counselling Services Suite 101 – 2022 Cornwall Street Regina, SK S4P 2K5 Phone: 306-751-2907 Fax: 306-751-2416 [email protected] Jaime Erickson Swift Current 350 Cheadle Street West Swift Current, SK S9H 4G3 Phone: 306-778-8438 [email protected] Karol Narfason c/o Ministry of Social Services 72 Smith Street Yorkton, SK S3N 2Y4 Phone: 306-786-1384 Cell: 306-338-8535 [email protected] Denise Swallow Ehrlo Counselling Services Suite 101 – 2022 Cornwall Street Regina, SK S4P 2K5 Phone: 306-751-2480 Fax: 306-751-2416 [email protected] Sarah Hammett Ehrlo Counselling Services Suite 101 – 2022 Cornwall Street Regina, SK S4P 2K5 Phone: 306-751-5659 Fax: 306-751-2416 [email protected] Cathy Deneiko Saskatoon Region CDS 3031 Louise Street Saskatoon, SK S7J 3L1 Phone: 306-477-4846 Fax: 306-373-3070 [email protected] 46 Part Five Community Resources 47 1. Accessing Community Resources Resources in the community are an important part of any plan. These may include some very practical resources such as government programs for income security, health care, education, employment programs, and possibly housing. Following up on strengths and interests may mean accessing civic recreational opportunities, local initiatives such as community gardens, environmental groups, fitness and cultural centres, art classes, sports teams—the list is endless, limited only by your creativity and investigation efforts. Successfully accessing community resources will often require some advocacy. Programs and activities may not be set up in a way that persons with a cognitive disability can easily take part. You may need to approach organizations such as the FASD Support Network to help you advocate for the individual. These organizations can provide training, materials and help with developing strategies to ensure success. 2. Suggestions Some other services that you may want to access include: Bus pass- this may be available for a reduced cost for persons receiving a living allowance through the Saskatchewan Assistance Program. Recreational Access Card- this allows an individual with a disability admission into any leisure centre and may be obtained free of charge through Leisure Services at City Hall. Community Activities- To find out about low cost or free activities in your community, check out your community website. Special Events- festivals, events and shows may be available at low cost or free. You can check your local or provincial tourism websites for a calendar of events. Health Region- You may want to assist your mentee to become a regular patient of a physician. Local health region websites provide a list of physicians taking new patients, along with their addresses, so that you can find one close by your mentee. Cultural Heritage- Providing cultural opportunities to Aboriginal individuals: There is a wealth of opportunities within urban settings. Outreach is essential to educate oneself about the agencies and programs available in regards to Aboriginal cultural practices and ceremonies. Individuals may need support in this area and once you have connected with the appropriate person, they will educate you about the protocols associated with the particular activity. http://www.saskatoonhealthregion.ca/pdf/Incredible_Parent_Directory_All.pdf *A revised guide will be available free of charge March 31, 2014 – Please contact the FASD Support Network to order 48 Community Organizations - Saskatoon Acquired Brain Injury (ABI) Outreach Team: 306-655-7743, www.abipartnership.sk.ca Alvin Buckwold Child Development Program (ABCDP): 306-655-1070, www.saskatoonhealthregion.ca/your_health/ps_alvin_buckwold.htm Autism Services: 306-665-7013, www.autismservices.ca Brief and Social Detox Units: 306-655-4195 Central Urban Métis Federation Incorporated (CUMFI): 306-975-9999; www.cumfi.org Community Living Association Saskatoon Inc. (CLASI): 306-652-9111 www.clasaskatoon.org Community Living Service Delivery (CLSD); 306-933-6300, www.socialservices.gov.sk.ca/community-living Early Childhood Intervention Program (ECIP): 306-665-1083, www.education.gov.sk.ca/ECIP Family Healing Circle Lodge: 306-653-3900 Family Service Centre: 306-244-0127, www.familyservice.sk.ca FASD Support Network of Saskatchewan: 306-975-0886, www.skfasnetwork.ca Mental Health & Addictions Services: 306-655-7777, http://www.saskatoonhealthregion.ca/your_health/ps_mhas_contact_us.htm Metis Addictions Council of Saskatchewan Inc. (MACSI): 306-652-8951, www.macsi.ca Partners in Employment: 306-657-2450, www.abilitiescouncil.sk.ca Partners for Workplace Inclusion Program: 306-651-7177, www.ccrw.org/pwip Radius Community Integration Services: 306-665-0362, www.radiuscentre.com Saskatchewan Abilities Council: 306-374-4448, www.abilitiescouncil.sk.ca Saskatchewan Advocate for Children and Youth: 306-933-6700, www.saskadvocate.ca Saskatchewan Alternative Initiatives (SAI): 306-244-5013, www.saionline.ca Saskatchewan Association for Community Living (SACL): 306-955-3344, www.sacl.org Saskatchewan Association of Rehabilitation Centres (SARC): 306-933-0616, www.sarcsarcan.ca 49 Saskatchewan Assured Income for Disability (SAID): 1-888-567-SAID (7243), http://www.socialservices.gov.sk.ca/SAID Saskatchewan Brain Injury Association: 306-373-1555, www.sbia.ca/aboutus.aspx Saskatoon Community Clinic: 306-652-0300, www.saskatooncommunityclinic.ca Saskatoon Food Bank & Learning Centre: 306-664-6565, saskatoonfoodbank.org Saskatoon Indian and Metis Friendship Centre: 306-244-0174, www.simfc.ca Saskatoon Mobile Crisis Services: 306-933-6200, saskatooncrisis.ca Saskatoon Tribal Council: 306-956-6100, sktc.sk.ca Saskatoon Centre of Reading Excellence Inc. (SCORE): 306-931-7323 White Buffalo Youth Lodge: 306-653-7676 50 Community Organizations – Regina Aboriginal Family Service Centre: 306-525-4161, www.afscregina.ca Acquired Brain Injury (ABI) Outreach Team: 306-766-5617, www.abipartnership.sk.ca Autism Resource Centre: 306-569-0858, www.autismresourcecentre.com Community Living Service Delivery (CLSD): www.socialservices.gov.sk.ca/community-living Early Childhood Intervention Program (ECIP): 306-347-5020, www.education.gov.sk.ca/ECIP FASD Support Network of Saskatchewan: 1-866-673-3276, www.skfasnetwork.ca File Hills Qu’Appelle Tribal Council: 306-332-8200, www.fhqtc.com Mental Health Clinic: 306-766-7800 Metis Addictions Council of Saskatchewan Inc. (MACSI): 306-522-3681, www.macsi.ca Mobile Crisis Regina: 306-757-0127, www.mobilecrisis.ca Partners in Employment: 306-522-2555, www.abilitiescouncil.sk.ca Regina Community Clinic: 306-543-7880, www.reginacommunityclinic.ca Regina Detox Centre: 306-766-6622, www.rqhealth.ca Regina and District Association for Community Living (RDACL): 306-790-5680, www.rdacl.ca Regina Food Bank & Learning Centre: 306-791-6533, www.reginafoodbank.org Saskatchewan Advocate for Children and Youth: 1-800-322-7221, www.saskadvocate.ca Saskatchewan Abilities Council: 306-569-9048, abilitiescouncil.sk.ca Saskatchewan Association of Rehabilitation Centres (SARC): 306-933-0616, www.sarcsarcan.ca Saskatchewan Assured Income for Disability (SAID): 306-798-SAID (7243), http://www.socialservices.gov.sk.ca/SAID Saskatchewan Brain Injury Association: 306-373-1555, www.sbia.ca/aboutus.aspx The Gathering Place: 306-522-7494, www.fhqtc.com/entities/rt-sis 51
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