Lost, confused and no idea where to start. Sound familiar? Well of course it does because that is what we all are all feeling. Even individuals who work within government social programs, with decades of training and expertise feel this way. Take a breath and know you are not alone. No matter how you feel: angry, guilty, tired, lost, confused or something completely different, know that there are many others that feel the way you do. The silver lining with so many people being in the same difficult position is that a bunch of us have failed in so many different ways. I have screwed up and made so many mistakes that I really should get a medal for it. Below we will go through a step guide on how to start tackling the giant task of transitioning your loved one that is dependent on you to an independent person, or at least a person who is not 100% dependent on you.
Information Gathering:
Time to figure out what disability your loved one suffers from? Really observe what is happening to your loved one. Are they having mobility issues, trouble remembering, unable to interact with other people? Keep a record of all the symptoms and how often they occur. Also speak with your loved one and ask them how they feel and what issues they are facing. Remember they need to be a part of the solution as well. This process is never truly done as things are always changing so make sure to keep these notes up to date as time goes on.
Next take these findings to your family doctor (and/or school if this is a child). Ask them how to get your loved one assessed/tested. Assessments help in 2 ways. Firstly they usually put a name to what is going on. Makes it easier to look for services, to advocate for loved ones, and also takes away the mystery of what the hell is going on. Secondly these assessments are required in order to prove your loved one is eligible for many government programs/services. So keep them safe and accessible. Even assessments done as a child can be required as an adult.
Case Study (My Brother):
When my brother was very young our family doctor and my parents noticed my brother was not progressing at the same pace as other children. So my brother got tested multiple times during his time in primary school, middle school and high school. We later used these assessments, school records and family doctor references to apply to various government services and organizations.
Throughout our lives me and my family have lived with my brother. Which gave us an intimate understanding of my brother’s behavior and skills. So when we did eventually get in touch with various services we were able to advocate on my brother’s behalf as well as explain what he needs.
Goal Setting:
I know what you are thinking. We already have a goal to transition my loved one to an independent life. But that is a big, vague statement that leaves everyone scratching their head on what to do next. Picking the right goals can be the difference between moving forward to independence or hitting your head against a brick wall. So how do we choose the right goals? There are several factors to consider: Time frame, realistism, Does your loved one actually want this goal.
Picking proper goals really requires you to understand your loved one with a disability. Understand what they currently can do, what they eventually need to be able to do and know what they want in life. If you are just starting out just speak with your loved one with a disability on what they want. Even if they are a child it is important to include them in the goal so they feel ownership of it. For example with my brother we used to just set tasks (take out trash, do laundry, etc.) and understandably he would fight on this. Now we have included him in the goal of him living by himself. Now we talk about these chores as practice time for when he lives by himself. It doesn’t alway work but it has definitely improved his success rate.
Make sure you pick goals that make sense for your timeframe. If you have a 5 year old, picking goals for their adulthood does not make sense. Too many things can change, maybe your abilities change, circumstances or even your loved one disability changes(better or worse). Make your first goal something you can do right now. For example if you are trying to get your loved one with a disability to clean the house, start with a goal of how do you hold a broom.
Finally make the goal realistic. For example most people already know that if you have a child struggling in math don’t make the goal for them to become an astronaut. Realistic goals also go further than that. Like in the case of a child struggling with math, don’t make the first goal to pass math class, or to pass the math test or finish their homework or even understand that math concept. Make the goal we will practice math homework for 30 min. Trust me even getting that 30 min can be a grueling exercise at times. Once you are consistent with working 30 min on math you can increase the goal to learning 1 math concept, then to finishing homework and so on. Start small and build over time.
Case Study (My Brother):
Overall Goal: Independent life
Main goals: Housing
Subgoal: Develop checklist of requirement for housing
Subgoal: Find affordable housing
Subgoal: Navigate Canadian social system
Main goals: Finances
Subgoal: Manage basic bills (rent, utilities, daily expenses)
Subgoal: Find income for housing, food, utilities, household supplies, etc.
Subgoal: Develop a budget
Subgoal: Finding a Job
Main goals: Social life
Subgoal: Practice learning to interact with other people
Subgoal: Find 1 social event that my brother would like to attend regularly
Main goals: Daily Skills
Subgoal: Learn to make 3 simple meals
Subgoal: Learn to do laundry
Subgoal: Learn basic house cleaning
Now you might realize that these goals don’t cover everything that is required to live a happy, independent life. That is by design. There is no way to fix everything all at once so don’t try to, don’t set yourself up for failure. Sometimes 1 goal is the most you can handle right now and that is ok. Just really spend time thinking about what is the most important thing right now and work towards that.
Finding Supports:
Great so now you have goals and are ready to start achieving them. So reviewing my brother’s goals as an example you will see that some are a lot more complicated than others. Finding affordable housing is pretty tough for anyone in Toronto much more than a person with a cognitive disability. While goals such as learning to do laundry are more doable. However both are required in order for my brother to live a happy, independent life. This is why we assign different goals to different people.
First grouping of goals needs to be done by your loved one. The second grouping of goals assigned to you and your family. The last set are the goals the “Need Help” category where outside help is required. So let dived back into our example.
Case Study (My Brother):
For Brother:
Learn to make 3 simple meals
Learn to do laundry
Learn basic house cleaning
Practice learning to interact with other people
For Family:
Manage basic bills (rent, utilities, daily expenses)
Develop a budget
Develop checklist of requirement for housing
Find 1 social event that my brother would like to attend regularly
Find income for housing, food, utilities, household supplies, etc.
Finding a Job
Navigate government social system
If you do this exercise and notice all the goals seem to be resting on just you or your loved one living with a disability then you need to go back and re-assign. Move some of those goals to the “Need Help” category. Be honest with yourself, maybe you can do this work today but can you keep doing this work for 40 years. Remember for your loved one to be independent, you need to not be required in their lives. Maybe getting to 100% independence is not possible, maybe it is. However, working towards that goal means working towards your loved one being happy and safe if you fall ill or pass away. Working towards that means avoiding burn out for yourself. Working towards that means having time for yourself and doing all things that you want like taking a nap.
For goals assigned to family and your loved one I assume you have a plan to tackle them. If you are really lost with those then they should be assigned to the “Needs Helps” category. It is at this stage you will realize why goal setting/gathering info was so important. When you start researching online and speaking with government services you will be able to quickly explain/advocate for what your loved one requires. So below is a list of government services/ waitlists my brother is currently on. Feel free to check out the links below and see if any of them are right for you and your loved one living with a disability.
Case study (my brother)
Finding Affordable housing:
Find Income:
Finding Job:
Navigating Government Social system
I have to be honest a lot of what I have on this blog is for the Canadian audience with a majority of services local to Ontario. With that being said there are alot of similar programs in other parts of the world so don’t be afraid to go looking and see what you find. Knowing what you want makes it a lot easier to find.
Review/Repeat:
This is arguably the most important and yet least completed step in the entire process. This is where you ask yourself the big questions.
- Do these goals still move me towards our goal of independence?
- Are the government services working well for my loved one with a disability?
- Has my loved one’s condition improved, deteriorated or stayed the same?
- Am I burnt out or going to be burnt out soon?
- Do I need to find help from others to complete certain goals?
- Can I find a more efficient way of doing what I am doing?
- Can I afford the services I am paying for?
The above is only a list of examples of questions you can be asking yourself. Make sure to develop your own based on your specific situation. How often you review is based solely on your situation. For small children, recently acquired disabilities, near end of life conditions or if you are just starting out I would recommend having more frequent reviews. Things are in flux and no point in wasting time on goals that are not working out for you. If you and your loved one are accustomed to an unchanging situation you can space out your reviews a bit further. Once you complete your review, it is time to do it all over again. Though this time you can hop between steps, go out of order or skip things all together (except for Review/Repeat). This process is to be repeated over and over again. Making modifications to the plan as new information comes to light or changes happen to your circumstances or once you achieve some of your goals and want to progress further.