Financial Planning & ABI

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1 DECEMBER 2013 Volume 20 Issue 4 Financial Planning & ABI SURVIVOR STORIES Registered Disability Savings Plan pg 16 The Basics of Structured Settlements Followng ABI pg provincial ABI conference pg 31

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3 DECEMBER 2013 BOARD OF DIRECTORS President Barbara Claiman Treasurer Brad Borkwood Corporate Secretary Dr. Debby Vigoda Directors Dr. Sheila Bennett Sabrina Chagani Gayle Dawson Jamie Fairles Maria Hundeck Loreigh Mitges Nancy Nicholson Lucie Sirois Tim Slykhuis Donna Thomson OBIA STAFF (support) (admin) Executive Director Ruth Wilcock...#238 Associate Director Tammy Dumas...#240 Financial Controller Gail Coupland...#230 Fund Development & Public Engagement Officer Wendy Dueck...#242 Advocacy Specialist Katie Muirhead...#229 Support Services Specialist Carla Thoms...#227 Admin. Services Coordinator Jennifer Norquay (for Terry Wilcox)...#234 Training & Admin. Assistant Diane Dakiv...#231 Communications & Program Assistant Kimberly Butcher...#224 I.T. Consultant Steve Noyes...#232 OBIA Review Editor Jennifer Norquay Design KAIZEN Marketing & Creative Design House Inside this issue Also Inside Survivor Stories Registered Disability Savings Plan: An Amazing Savings Vehicle - by Adam Usprech Feature Article The Basics of Structured Settlements Following an Acquired Brain Injury (ABI) 2013 Provincial ABI Conference Event photos and thanks to our generous sponsors 31 Ruth s Desk 4 In the News: Concussion/mTBI Strategy Update 7 Survivor Stories: From Care Provider to Care Receiver 10 Developing Low-Cost Brain Injury Rehabilitation Programs 19 Across the Province 23 Giving..for the Joy of It 28 Event Calendar 40 Community Associations 42 Provincial Associations 46 OBIA Training 48 VISIT Connect with us! Copyright 2013, PUBLICATIONS MAIL AGREEMENT NO RETURN UNDELIVERABLE CANADIAN ADDRESSES TO: Ontario Brain Injury Association, PO Box 2338 St. Catharines, ON L2R 7R9 Ph: (support) (admin) or Fax: , Registered as a Canadian Charitable Organization Reg. # RR0001 3

4 OBIA REVIEW Awareness 4 From OBIA s experience, we know that the quality of life of a brain injury survivor would be greatly enhanced if additional Ministry funding was allocated to supportive housing. By Ruth Wilcock, Executive Director, OBIA RUTH S DESK Navigating Challenges, Celebrating Triumphs and Advocating for Change It s my honour and pleasure to extend warm holiday greetings to all our members and dedicated supporters on behalf of the OBIA board of directors and staff. The past year has been one of challenges and triumphs. For OBIA staff, our most gratifying successes are when we are able to help someone living with a brain injury find the supports they so desperately need and yet have been unable to obtain. The needs of these individuals vary from direct health care challenges to everyday quality of life issues. Often the common barrier to obtaining support is simply a lack of public funding. OBIA receives numerous calls from families in financial distress after a loved one has sustained a brain injury. According to the OBIA Impact Report (2012), 75% of respondents indicated that they were employed before their injury and only 13% stated that they are currently employed for pay. Additionally, the employment status of 46% of caregivers had been affected as a result of a loved one sustaining a brain injury. Undoubtedly, in addition to the devastation and heartache of a brain injury, family finances also becomes a major stressor. This financial stress is often exacerbated by attempts to navigate the murky waters of income support programs such as Ontario Disability Support Program (ODSP) and or Canada Pension Plan (CPP). This process can be extremely overwhelming for individuals and families. We are finding that more and more claims are being denied, resulting in the individual with the brain injury being thrown into a complex appeal process. Fortunately, we have been able to help many of these individuals achieve positive outcomes with their ODSP and CPP appeals. Accessing publicly-funded healthcare services after a brain injury is another colossal challenge. The need for these services extends far beyond the acute and post-acute hospital phase of recovery. The Provincial Acquired Brain Injury Network (PABIN), of which OBIA is a member, has put forward some of our concerns to the Ministry of Health

5 DECEMBER 2013 and Long Term Care. One of the areas we addressed was supportive housing. According to Colantonio et al (2010): Supportive Housing is extremely limited for individuals living with an ABI who require this level of support across the province. Waiting lists for housing are long and opportunities for suitable placement are few. As a result, these individuals wait for access to the next stage of care or settle for alternate living arrangements that provide care geared to seniors and do not include services that are ABI-specific, such as rehabilitative care and vocational opportunities. From OBIA s experience, we know that the quality of life of a brain injury survivor would be greatly enhanced if additional Ministry funding was allocated to supportive housing. Another issue that we (PABIN) addressed as a group was the need for systematic change. We communicated to Minister Deb Matthews that a more systematic approach to the planning of services with focused attention on communitybased programs to address the lifelong needs of an ABI survivor is essential. As future funding is allocated to expand and improve transitional care, the complexity of the ABI population and the need for sustainable long term service and supports in the community must be considered. An enhancement of community services would allow individuals living with an ABI to stay connected and involved (allowing them to thrive in their communities). It would also relieve caregiver burden and decrease the need for continued intervention and utilization of more expensive healthcare services or inappropriate services. Decreasing caregiver burden and increasing re-integration of the survivor back into the community is a win for all. We know that the challenges are great for those living with an ABI and their families. However, as members of the ABI community, we must work together to continue to push for solutions to these challenges, celebrate when we are able to help survivors achieve success and steadfastly advocate for systemic change that can enhance the quality of life for those we serve. Wishing you, your family and loved ones many triumphs in the coming year. 5

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7 DECEMBER 2013 awareness In The News Concussion/mTBI Strategy Update New Research, Progress and Priorities Reprinted with permission from Ontario Neurotrauma Foundations Issue 22 of NeuroMatters, June For the past two years, the Ontario Neurotrauma Foundation has led the development of a Concussion/mTBI Strategy in Ontario. The goal was to plan out a better system of concussion/ mtbi recognition, diagnosis and management, from the time a concussion occurs, to getting the right assessments and treatments, and then reintegration into daily activities. Working groups were set up to address priority themes in five areas in order to plan and work towards improvements. The Third Summit of the Concussion/mTBI Strategy in March 2013 shared findings and discussed implications of several key projects. The participants, encouraged by progress to date, renewed their commitment to the Strategy, determined to work together on next steps, priorities and implementation. Dr. Mark Bayley, Chair of the Strategy, believes progress is being made. When we originally started, areas like recognition were in the red--that is, not doing well. Now some things are moving forward; there is an increasing feeling that concussions are being recognized more, and in many cases managed better. Some additional messages and findings from the Summit are summarized. New Insight on Frequency and Access to Care The Strategy s latest research is showing that the incidence of concussion/mtbi in Ontario is three times higher than previously identified. It also tells us most concussions are diagnosed in emergency departments. Although this indicates public awareness of concussion/mtbi is rising, wait times to see an appropriate specialist are too long, in most instances, over 200 days. There are even fewer clinics that treat children and wait times to see specialists are longer. These findings are particularly worrisome since children and youth have the highest incidence of concussion/mtbi. Getting appropriate care at the right time is very important, explains Corinne Kagan, Senior Program Director of ONF. Most people will recover over time. But some individuals with concussion/mtbi have several troublesome symptoms and therefore need access to a range of experts. Unfortunately, we see evidence of inconsistency in management of concussion/ mtbi and access to specialized concussion care is variable. Fifteen percent of individuals with a concussion/mtbi don t recover well. For this group, says Dr. Bayley, We simply have to get them in sooner. Early and appropriate treatment 7

8 OBIA REVIEW of a concussion/mtbi can help reduce the extent of persistent symptoms and assist with their management. Diagnosis and Early Education Still Key Thanks to the Strategy, there are resources available for physicians who make the initial diagnosis. These include Guidelines for Mild Traumatic Brain Injury and Persistent Symptoms (released in 2011), which documents 72 recommendations for healthcare professionals. They can be found on the Concussion Ontario website, www. concussionsontario.org and Over the next year, ONF and the strategy partners will continue to work on approaches for improved diagnosis and education for early care, e.g. implementing the above guidelines in emergency departments, developing similar protocols for children with concussion/mtbi and updating the 2011 Persistent Symptom Guidelines. Recognition and Awareness Taking Hold Although more people today in Ontario know that concussion/ mtbi should not be ignored, Dr. Bayley emphasizes that the message about care following an mtbi needs reinforcing. The Strategy is also looking to adopt clearer definitions of concussion/mtbi and post-concussion syndrome. Being able to describe these in a standard manner, with a more universal understanding of the spectrum of the injury, will make it easier to recommend and implement standards of care. Summary There clearly is an opportunity to improve access to specialized concussion/mtbi care in Ontario. ONF and its collaborators are working on this through the Strategy and its implementation, says Dr. Bayley. We believe that better coordination of care and better access to more specialized concussion care is still needed. This should reduce the number of people who end up with a prolonged disability. Kagan agrees. There are some exciting developments under way and there s a lot to do. It s going to take all of us. Note: Ruth Wilcock, Executive Director of OBIA serves on the Coordinating Committee of the Concussion/mTBI Strategy. We still find that it s a challenge for some to acknowledge that they should consider what they think is a little ding on the head as something potentially serious. We re working on a package of tools for coaches, teachers and Trainers so there s a better understanding about the definition of a concussion/mtbi, the signs, what to do, when to go to the ER or doctor s office. Another concern is how to get the message out about the right degree of rest. Looking for the Ideal Concussion Clinic Over the past 18 months, the Strategy surveyed ABI and sports concussion clinics that offer various levels of concussion/mtbi care. The survey showed that although each clinic had their individual areas of expertise, none offer an full spectrum of care. In addition, clinics were not appropriately dispersed in areas across the province where they are most needed. In response, the Strategy is working on what ideal care is and what an ideal clinic would look like, including standards of care and better distribution of services. There s also a wide range of interdisciplinary care providers, i.e. sports medicine, rehabilitation experts and other specialists, who want to support people with concussion/mtbi. However, better collaboration is needed to ensure care is comprehensive enough. 8

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10 OBIA REVIEW support SURVIVOR STORIES From Care Provider to Care Receiver By Tom Stadnisky, Dale Brain Injury Services 10 I work for Dale Brain Injury Services in London, Ontario. I m a Manager of Assisted Living Services and have been there for about 14 years. At Dale, our neurobehavioural, community-based model of brain injury rehabilitation enables us to help people rebuild their lives. The objective of our services is to help clients maximize their potential for independence, reintegration into their community, vocational and avocational success and positive relationships. I have been a Certified Instructor for over five years. At our agency, Nonviolent Crisis Intervention training provides a range of skills for our staff to use in diverse situations. We aim to always employ the least intrusive protocols with our clients. CPI provides practical skills that staff can adapt to our clients various needs. It emphasizes the importance of maintaining a therapeutic relationship with our clients, who can at times display disruptive and dangerous behaviours and looks at ways to help them improve their behaviour. I walked into work 10 years ago and while talking with some coworkers, I uttered something under my breath, fell to the ground and had a tonic-clonic Grand-Mal seizure that lasted over five minutes. I was ambulanced to the hospital and immediately diagnosed with epilepsy. I had a difficult time with that diagnosis as I assisted clients to get through seizures on a fairly regular basis. After seeing individuals at the Epilepsy Support Centre, I opened up to informing people that I had EPILEPSY. I got a second job with disability Awareness, where we delivered training on how individuals with disabilities can be accepted and supported. After a full year of being seizure-free, I got my driver s license back and was doing fine, until four summers ago, when I had a seizure while driving and had a car accident. After this experience, I needed assistance with care, including care of me until my seizures were managed, as well as care of my children, who were both babies when the seizures began. I also needed assistance with transportation for me and my children to and from work and day care, etc. I struggled with depression, extreme fatigue and pain after coming out of my seizures. After my first appointment with a new neurologist, I was on a quick road to recovery, going to my first stay in the epilepsy unit at University Hospital. It was helpful to engage with individuals and I related to their struggle with the issues associated with dealing with seizures. Later, I was deemed eligible for surgery and decided to opt for it. Now here I am, three and a half years post-surgery, feeling very good and, knock on wood, seizure-free! I m back at work full time and got my driver s license back as well. While I was re-obtaining by CPI Instructor status, I shared my story with my Global Professional Instructor and we problem-solved on ways to deal with my disability. I very much enjoy providing training to our staff. I have a few side effects resulting from the surgery that I m finding ways to cope with, as I have no working memory. At Dale, we support clients who have ABI s. After my surgery, I struggled with whether to refer to my disability as the result of an Acquired Brain Injury (like our clients) or an Accepted Brain Injury, as I had the choice of whether to undergo the procedure. I offer my story in the hopes of helping others and to thank my supports among them, Dale Brain Injury Services, Epilepsy Support Centre, University Hospital, CPI, and of course, my wife, children and family and friends. Share your story OBIA would like to hear from you! Upcoming themes: March 2014 Social Media and ABI June 2014 Brain Injury Awareness Month September 2014 Accessibility December 2014 Wellness Send your story to:

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12 12 OBIA REVIEW education It is important to explore the option of structuring your settlement as early as possible, as the only opportunity to structure funds comes when the settlement is reached. By: Barry Chobotar, Henderson Structured Settlements The Basics of Structured Settlements Following an Acquired Brain Injury (ABI) An Acquired Brain Injury (ABI) is a lifechanging event, often bringing about a great deal of future challenges, both medical and financial. Those with an ABI or their guardians are saddled with ongoing medical, rehabilitation, attendant care and housekeeping costs (to name only a few). These costs, in addition to the usual expenses such as food and housing, demand a great deal of disciplined financial planning for an individual with an ABI or their guardian to pay out of a lump sum settlement. The nature of a structured settlement, which pays a regular, guaranteed, tax-free income (with a built in rate of return), can greatly simplify financial planning, while providing financial security. These aspects make a structured settlement an attractive option to those expecting a personal injury settlement and facing a future with an ABI. What is a structured Settlement? A Structured Settlement is a tax-free alternative to a Lump Sum Settlement, whereby all or a portion of the damages are paid to an injured individual (or their guardian) by providing periodic payments rather than a single lump sum. A structured settlement is a special type of annuity purchased from one of five major Canadian Life Insurance Companies. The annuity provides a guaranteed built-in rate of return. Structured settlements provide a financial return that is virtually riskfree, because there are three different organizations that guarantee the income will be paid: the Life Insurance Company that provides the annuity, a Canada-wide financial institution called Assuris which will step in and make payments if any Canadian insurance company fails, and the property and casualty insurer is still liable for making the payments if the Life Company and/or Assuris fails. Below we have outlined the basic steps to a structured settlement for a personal injury case that involves an ABI. These steps begin prior to any settlement discussions, and ends with the placement of a structured settlement. It is important to explore the option of structuring your settlement as early as possible, as the only opportunity to structure funds comes when the settlement is reached. At that time, the individual (or their guardians) must choose between a lump sum settlement or a structured settlement, or a combination of taking part as a lump sum settlement and placing part into a structured settlement, which must be agreed to by all parties involved.

13 DECEMBER 2013 The first step, which should be taken prior to any settlement discussions, is to discuss the option of a structured settlement with your lawyer. Structured settlements are especially worth exploring if there are concerns about financial security, financial discipline, future earning capacity and high ongoing costs. Additionally, individuals or guardians who do not feel comfortable managing a large sum or facing investment risk should also consider the option of a structured settlement. At this stage, your lawyer can contact a structured settlement consultant who can work with you and your counsel to explore the options a structured settlement could provide. This process involves the creation of various structured settlement illustrations which explain the income payments that a structure could provide at different expected settlement amounts. These illustrations can also help with financial planning, or establishing total costs for ongoing expenses (medical, rehabilitation, etc.). This can sometimes involve the submission of medical documents, which can result in a higher return, if there is an expected reduction in life expectancy due to an individual s injuries. These total costs can also be useful at the mediation in supporting counsel s arguments for a settlement amount. The second step, which takes place after the option to obtain a structured settlement has been discussed and approved by all parties and a settlement is approaching, is to finalize and select the desired structured settlement plan. Your structured settlement consultant and lawyer will work with you to look at your future financial needs and select the plan that works best for you. Structured settlements are very flexible and can take many forms, however it is very important to be deliberate and careful about selecting a plan, as once a structured settlement is in place, it cannot be changed. Structured settlements are created by answering the seven following questions, in order to create the plan most suited to the injured individual: 1. What is the amount to be invested? 2. What is the term of the structured settlement (i.e. how long will the plan run)? 3. When is the income to commence (i.e. immediately or deferred into the future)? 4. What is the frequency of payments (i.e. monthly, annually, etc.)? 5. Will there be any lump-sum payments, and if so, when are they required? 6. Will the payments be level or indexed (i.e. at a fixed percentage (2%) or CPI) 7. Will there be a guarantee period to a secondary payee, and what length will this guarantee be? The third step, once a final plan has been selected and a settlement has been reached, is to place (invest) the settlement funds into a structured settlement. This last step is performed by your structured settlement consultant, who requests the settlement funds from the party paying the damages, and performs a final brokerage, ensuring the best possible returns for your chosen structured plan. Your structured settlement consultant will then provide you and your lawyer with all 13

14 OBIA REVIEW the necessary documents and information regarding your structured settlement. Additionally, your consultant will assume an ongoing administrative responsibility to ensure the funds continue to flow as directed to the injured individual, their guardians, or a named secondary payee. To properly compare a structured settlement to other investment options available, the following questions should also be asked of the person or persons providing financial advice: 1. What is the rate of return represented in your plan? 2. Is this a guaranteed rate of return for the entire period of the plan or merely an estimate? (A structured settlement is guaranteed.) 3. Is the income represented in your plan tax-free? (Structured settlement income is absolutely tax-free.) 7. Is your plan judgment-proof? (A structured settlement, effectively, is.) 8. Are there any additional management fees with your plan? (With structured settlements, there are none.) Reaching a settlement while recovering and adapting to an ABI is a difficult, stressful time for an injured person and their loved ones. Despite this challenging situation, it is vital to explore and research every settlement option, as that settlement will provide the financial foundation for the rest of their life. In providing risk-free, tax-free income with a built-in return, structured settlements can simplify financial planning post-settlement while eliminating anxieties about investment risk, while giving the injured party (and/or their guardians) an opportunity to focus on recovery and their enjoyment of life. 4. Does your plan provide guaranteed indexation to offset inflation? (A structured settlement plan can be formulated to include this.) 5. Does your plan provide an additional guarantee to a designated secondary payee? (A structured settlement plan can be designed to include this.) 6. Does your plan provide protection against the payment of taxes and/or capital gains upon your death? (Structured settlements can be formulated to provide this protection.) podemos ayudarle. pwede kaming tumulong. chúng tôi se giúp. ~ As Toronto s largest ethnic personal injury law firm, speaking 24 languages, we are dedicated to ensuring our clients receive the rehabilitation and fair compensation they deserve, in a language they understand. At Carranza, many of us are first or second generation Canadians who are able to provide expert legal representation in multiple languages. Not only can we help overcome the language barrier, but we can also assist with many of the cultural issues that may arise throughout treatment and recovery. No matter how you say it, we can help

15 DECEMBER 2013 Rehabilitation for Children and Adults with Neurologic Impairment Assessment and Treatment Residential and Supported Living o o o Etobicoke Hamilton Mississauga Community Rehabilitation Information: Outcome Oriented, Cost Effective and Innovative 15

16 OBIA REVIEW support SURVIVOR STORIES Registered Disability Savings Plan: An Amazing Savings Vehicle By Adam Usprech I was hit by a car while riding my bike 22.5 years ago! I endured a massive traumatic brain injury. I also had smaller injuries including numerous fractures and nerve damage. I was in a coma for 11 days and I stayed in hospital for 1.5 months. After my initial stay in hospital, I focused my first year on recovery and learning how to remember so I could become a productive member of society. Due to my injury, the impact on my life is immense. Regardless of my education, my path to success in my career is unique and will take longer to achieve the level of success I am seeking as compared to my uninjured/able-bodied peers. But I am working on it, ALWAYS! For any individual who has sustained an injury, their future financial stability is affected. Whether it is by large, constant medical bills and all the associated costs that are not covered by your medical plans, including the cost of your time, or the effect it will have on your future income earning potential, the costs can add up. In many instances, the success of the individual after recovery can be affected by the perception of others. The ability to thrive in a successful career may be more challenging than others. The traditional workplace of an individual with a brain injury can be very challenging as there is very little support for disabilities that cannot be seen. This can cause tenure at jobs to be very short and this will affect your future savings. As a survivor, from my perspective, the costs of a traumatic brain injury are ongoing. Regularly having to explain myself to others that a given task may take me longer is a constant. This can have an effect on an individual s job. I have seen in organizations that, regardless of your ability to do a job, if you need to take that extra amount of time to get it done, despite corporate tag lines, and how much businesses support diversity, there is often little support and understanding towards people with invisible disabilities. Due to the lack of job security, having the certainty of your own savings plan with incredible amounts of free money ($90,000) is terrific. Regardless of how much support the individual might have from family, friends or other support systems, the individual and their family can now feel a little more at ease with the advent of the Registered Disability Savings Plan (RDSP) in THE RDSP This plan is awesome! It provides incredible grants and has unique status due to its broad government support across the country. Because of this national support, the growth on the money invested in the RDSP is TAX FREE! It will remain tax free while it is in the plan and grow and accrue compound interest along the way. This can be huge as compared to other investment vehicles that have to pay tax along the way. Also, when the plan begins to payout, it will payout in the hands of the beneficiary, not the contributors. (Typically at a lower tax rate) To have an RDSP, the requirements are listed as follows: You must have a disability expected to last longer than a year (qualifies for the Disability Tax Credit certificate) You must be a Canadian citizen You must be less than 60 years old You must have a valid S.I.N. # As long as the account holder allows, almost anybody can contribute to the RDSP of the individual beneficiary, so long as they have the authority of the account holder. This is so the account holder can track the fund inflows and ensure they do not surpass the $200,000 lifetime contribution limit. Also, the account holder and/or the beneficiary may want to ensure that there is funding properly allocated over their plan s lifetime, to achieve maximum government funding. 16

17 DECEMBER 2013 Government funding: This is general and there are a few variations, but will capture the essence. Typical annual contribution of $1500, (this amount will maximize the grants; however, grants can be maximized in some cases with lower contributions) Net family income: $87,123: Government Contribution - $1000 <$87,123>$43,561: Government contribution - $3500 >$43,561, but is >$25,356: Government contribution + $500 < $ 25,356: Government contribution + $500 Annually, based on your net family income, the government CAN contribute $4500 on a contribution of just $1500. This is an unbelievable amount of free money available to people with disabilities, available annually with contributions. Here s another terrific feature! It does not affect any of the benefits of the disabled person. It does not affect the individual s disability payments through ODSP! With the incredible effect of compounding and beneficial tax treatment, the amount of money in an individual RDSP plan can snowball to quite a large amount to the benefit of the beneficiary, over time. The funds must stay in the plan for a minimum of 10 years from the last contribution date, so as not to trigger any claw-backs of the government s free money. However, any withdrawals from the plan will trigger repayments of any grants/bonds in the previous 10 years. So, if withdrawal from the plan is necessary, please speak with an advisor. Again, money that is invested in the plan must remain in the plan for a minimum of 10 years from the last contribution date or the benefits of the plan will be at risk. The plan is designed for the future security of people with disabilities. This is not intended to be money for movie nights or trips while the plan is young. It is designed to provide funding for the beneficiary down the road. The magical effect of compounding the invested RDSP will create a considerable amount from which the beneficiary and the account holder (this can be the same person) can decide, how the funds will be distributed for the beneficiary. Assuming the plan was started for a newborn and is contributed to annually for the next 49 years, with Government Grants along the way, their RDSP will have grown considerably in size. When it is time to begin receiving the benefits of the plan there are two ways this can happen. DAPs and LDAPs Disability Assistance Payments (DAP) are payments from the plan that can come out in chunks based on the needs of the individual. (It will be prudent to speak with an accountant to be aware of any tax implications on any, and especially larger withdrawals.) Lifetime Disability Assistance Payments (LDAPs) are payments from the RDSP that are structured to come out as regular payments to support the individual along the way. With life expectancies increasing, these can be prudent for some to ensure that there is a lifetime funding mechanism to help manage costs. The RDSP is an amazing savings vehicle! As a financial advisor with a disability it is my aim to help all Canadians, who either care for or are a person with a disability, to open and manage an RDSP. After my initial recovery I went to university, where I completed two degrees, a B.Sc. as well as my M.B.A. Armed with this education I am aspiring to achieve greatness in the world of finance and investments. Regardless of the extent to which I achieve such success, I feel the added financial security of my RDSP. I hope that all who read this article will help me spread the word about the RDSP to anyone with a disability. OBIA s Online Bookstore A great selection of Books, DVDs, and Manuals for professionals, survivors and family members. Visit Brain Fast Facts Did You Know? 79% of caregivers admit that the brain injury has impacted their family finances. 85% of those employed at the time of injury are currently not employed. 30% of ABI survivors are not satisfied with their ability to manage money OBIA Impact Report 17

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19 support Developing a Low-Cost Brain Injury Rehabilitation Program: Guidelines for Family Members By Judith Falconer, Ph.D. DECEMBER 2013 The day you waited for with such mixed feelings finally arrived: your family member was discharged from rehabilitation after sustaining a brain injury. Contrary to the predictions you may have heard the night of the accident, he/she did survive; he/ she woke up; he/she began to talk, to eat, and maybe even to walk. Each time you met with members of the rehabilitation team, they told you about his/her progress over the past several days. You saw his/her progress each time you visited and when he/she was home on weekend passes. Family members and friends visited in the hospital, the rehabilitation setting and even during trips home on weekends; they all offered to help once he/she was home for good. You knew things would work out, that he/she would continue to improve, that you could handle it all. But now that he/she has been home for several weeks, months or maybe even years, the situation is very different from what you saw in the rehab setting and very different from what you expected. He/she didn t continue to improve; in fact, his/her skills and behaviours may even have deteriorated. He/she did less and less each day and demanded more and more from you. No one comes to visit him/her or you, including family members. It breaks your heart to see him/ her struggling to accomplish simple tasks. But at the same time you get angry when he/she behaves inappropriately. You realize that unless the situation changes, he/she may survive but you won t. At this point, you re ready to try anything which might make things better. Unfortunately, insurance benefits have usually been totally exhausted; if local brain injury programs exist, you have already discovered that he/she is not eligible or that the programs cannot meet his/her special needs. You may decide to design a program for him/her using free or low-cost resources which exist in your community. The steps listed below may serve as a guide if you wish to develop a program to continue rehabilitation after discharge to the community. STEP 1: Obtain Detailed Objective Information About: The injured individual: Since research has clearly demonstrated that the most disabling consequences of brain injury are cognitive and behavioural, information about the individual s current level of functioning in these areas is essential if a realistic program is to be developed. To obtain such information, neuropsychological evaluation should be completed. Those with limited funding may be able to receive evaluation at reduced rates through their community mental health centre or from a local hospital or clinic setting. Neuropsychologists in private practice may be willing to provide this service on a sliding scale. You need specific information on such things as how much he/she can learn, what is the best way for him/her to learn, what activities are most likely to present problems, what limitations he/ 19

20 OBIA REVIEW she may have perceptually and how you can set things up to maximize his/her abilities. Your rehabilitation program must also take physical limitations into account. In addition to general information about the individual s medical status and physical abilities, thorough evaluation of both visual and auditory systems should be completed. Management of medical needs must be an integral part of the rehabilitation program. Adaptive equipment such as a wheelchair, braces and communication devices, must be appropriate to the individual s current needs and in good repair. Your support system: Before undertaking a rehabilitation program, family members must objectively decide how much time, money and emotional energy they will be able to commit and how long they will be able to do so. This includes such factors as who will provide transportation to activities, supervision in both the home and the community and what materials will be needed. Some of the support which will be needed may not be provided directly to the injured person: perhaps a family member who does not drive can do the laundry or cook meals while you transport the injured individual to a recreational activity or a class. It is critical that your assessment of your support system be accurate; otherwise you may find that you are the one who is being rehabilitated, whose behaviour problems are being managed and whose cognitive abilities are deteriorating. An organized program requires the effort of more than one individual unless it is undertaken in extremely small and manageable steps. Community resources: This is definitely the time to let your fingers do the walking. A wide range of community services, many of which are paid for by your tax dollars, are available in most communities and are appropriate for individuals who have sustained brain injuries. Most of these agencies do not advertise; many are not aware of the special needs of those who sustain brain injuries and how their agency s services might be utilized by this population. Contact your local and/or provincial brain injury support groups for a list of community resources, talk with professionals working in local brain injury programs and work your way through the local phone book. At a minimum, you should contact the public transportation system, local library, community colleges and universities, public schools and parks/recreation departments; you should also routinely check radio/television listings for appropriate offerings, especially those on public broadcasting. Read your local newspaper to identify activities and organizations which may be useful and appropriate. If a caseworker has been assigned by an agency, discuss your needs with that person, making sure you emphasize the injured individual s strengths as well as needs and deficits. Involve your physician in program development to ensure that the individual s medical needs are being met; on a more practical level, the physician should be contacted if an accessible parking permit or accessible bus pass is needed and has not yet been obtained. Brain Basics Training Program Upcoming Dates/Locations: May Toronto, ON Providing frontline Health Care Workers, Caregivers and others with an understandable introduction to the world of Brain Injury. For details, contact Diane Dakiv, Training & Administrative Assistant. 20

DEVELOPING A LOW COST BRAIN INJURY REHABILITATION PROGRAM: GUIDELINES FOR FAMILY MEMBERS

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