#MakeDTCFair

On Thursday, February 1, 2018, Autism Canada testified at the Senate Standing Committee on Social Affairs, Science and Technology regarding the Disability Tax Credit (DTC) and the Registered Disability Savings Plan (RDSP). During this meeting, Autism Canada discussed our five recommendations for improving accessibility to the DTC and RDSP:

  1. Create clear, transparent and informed processes for applications, reviews and appeals;
  2. Develop clear, consistent and universally accepted classification criteria for disabilities;
  3. Uncouple the RDSP from the DTC;
  4. Monitor and evaluate population-based disability data at the federal level; and,
  5. Include the neurodevelopmental community on the Disability Advisory Committee.

Read the full Senate Committee Submission here.

Later that afternoon, Dermot Cleary (Chair, Autism Canada), Paul McDonnell (PhD., L.Psych. Psychologist, New Brunswick) and Jennifer Zwicker (PhD., Director of Health Policy, School of Public Policy, University of Calgary) met with the Office of National Revenue. They discussed the five recommendations in detail with Anne Ellefsen-Gauthier (Director of Policy, Office of the Minister of National Revenue) and Josée Guilmette (Chief of Staff, Canada Revenue Agency), and provided them a copy of our Senate Committee Submission.

Autism Canada is committed to making this right for the autism community across Canada. We will keep you posted on our progress. In the meantime, we are asking you to use the hashtag #MakeDTCFair on Facebook, Twitter and Instagram. Please like and share Autism Canada’s posts on this important issue so that our voices will be heard.

Thank you for your support; together, we can #MakeDTCFair for Canadians with autism.

DTC Statement from Ontario Physicians

We, the undersigned groups, are writing to share our collective concern that a number of families of children with autism spectrum disorder (ASD) and related developmental disabilities have had their Disability Tax Credit (DTC) applications rejected by the Canada Revenue Agency (CRA). These include applications specifically for children diagnosed with Level 3 ASD, a level that indicates a child who requires very substantial support. We are frequently noting that the CRA is concluding that the impairments in children with autism are a reflection of their younger age (and cannot be adequately assessed). Autism is a lifelong neurodevelopmental disorder based on exhibited impairment.

Rejections to families place an undue burden on them in ensuring support for services and resources given the needs of children with ASD, along with an economic cost on unrealized potential. It detracts from the original purpose of the DTC. It also impacts the ability of physicians to deliver care at the same time as needing to fill out additional paperwork that is often redundant. More specifically, physicians are spending hours per week filling out the original applications, filling out requests for further information, and writing letters of support for families who are appealing the rejection. There is a lack of clarity in what is expected from the CRA in terms of information required, and many physicians continue to re-iterate the evidence already provided in the original application. The process is resource-intensive for physicians and highly stressful for families, and negatively affects the mental and emotional well-being of families, ultimately leading to more spending on healthcare.
 
There is an urgent need to making the application more explicit in what the CRA is looking for with regards to eligibility criteria and providing feedback to physicians about what the CRA is not currently approving based on the current categories. This lack of transparency in the decision-making process is contributing to inefficient use of physician resources and a lack of ability to advise families on eligibility for the DTC. We would be very willing to discuss our experience in more detail, and can be reached at m.s.zubairi@gmail.com.

Dr. Nicola Jones-Stokreef
Chair, Physicians of Ontario Neurodevelopmental Advocacy

Dr. Shawn Kao
Chair, Pediatric Section, OMA

Dr. Hirotaka Yamashiro
President, Pediatricians Alliance of Ontario

More About Applying for the Disability Tax Credit

In spite of the current problems with the Disability Tax Credit, it still has the potential to provide crucial tax relief for individuals with disabilities and their families. Revenue Canada has online information about the credit, who is eligible for it, and how to apply:

What is the disability tax credit?

The disability tax credit (DTC) is a non-refundable tax credit that helps persons with disabilities or their supporting persons reduce the amount of income tax they may have to pay. An individual may claim the disability amount once they are eligible for the DTC. This amount includes a supplement for persons under 18 years of age at the end of the year.

The purpose of the DTC is to provide for greater tax equity by allowing some relief for disability costs, since these are unavoidable additional expenses that other taxpayers don’t have to face.

Being eligible for the DTC can open the door to other federal, provincial, or territorial programs such as the registered disability savings plan, the working income tax benefit, and the child disability benefit.

Find out how you can benefit

Meet the people who may be eligible for the DTC or other government programs for persons with disabilities.

Who is eligible for the DTC?

You are eligible for the DTC only if we approve Form T2201, Disability Tax Credit Certificate. A medical practitioner has to fill out and certify that you have a severe and prolonged impairment and must describe its effects. Answer a few questions to find out if the person with the disability may be eligible.

If we have already told you that you are eligible, do not send another form unless the previous period of approval has ended or if we tell you that we need one. You should tell us if your medical condition improves and you no longer meet the criteria for the DTC.

See Eligibility criteria for the disability tax credit to know more about the requirements to be eligible for the DTC.

Click here to read the rest

How a physician completes the DTC application form may also affect the individual’s eligibility. For that reason, the Canadian Paediatric Society has provided physicians with a resource to help them complete the DTC application when the client has an autism diagnosis.

There is also a volunteer-run Facebook group where members support each other in applying for the DTC and opening RDSPs.

Preparing for Employment with ASD

Maureen Bennie
From the Autism Awareness Centre, Inc. Blog:

The unemployment statistics for those with autism is in the range of 70-80%. Reading such a statistic makes one ask, “Why is this so?” As a parent of two young adults with autism who finished school in June 2017, I am starting to see firsthand why finding a job is difficult.
 

There are so many skills needed to be successful in a job. Some of them are:
  • Presentation – good hygiene, neat appearance
  • Communication
  • Time management
  • Organizational skills
  • Adaptability
  • Flexibility
  • Decision-making
  • Ability to work independently
A person with autism might have a few of these skills, but struggle with others, making it difficult to get and sustain work. The key is to implicitly target these areas as early as possible so that your child has a foundation of social and organizational skills when it comes time to enter the workforce.

Achieving Critical Mass with ASD
 
There is a new area of study emerging in autism called critical mass, which means true mastery of a skill. Critical mass is the point where an individual has gained enough information to be successful in situations, activities, or skills for which instruction has not been provided. When there has been enough instruction and multiple experiences, a tipping point can occur and the person can apply the skill in many new ways.

Neurotypical people gain critical mass in the areas of social, communication, and basic living skills simply through implicit learning, not by being taught in school. However, people with autism need explicit instruction in these areas throughout their school years in order to gain these skills – they won’t learn these skills without direct instruction. This is what makes the leap out of school and into employment so difficult – these skills have not been mastered, as they are not taught in school like academics are. Reading, writing and mathematics may be acquired upon graduation, but the social, communication and living skills pieces are missing, which makes a successful adulthood difficult to achieve. How do we change this?

Start Earlier
 
While some school programs have life skills or social skills programs, they are often not started early enough, the programs don’t run all year, or they are faded by a certain age. Because so much practice is needed to acquire a skill, multiple experiences must be provided and ongoing. Also consider activities outside of school such as social skills groups, cooking classes, or programs through a local leisure center to provide ongoing practice.

Volunteering
 
Volunteering provides an important opportunity to prepare for the world of work. People with ASD need time and experience to build skills and feel comfortable out in the community. Volunteering within a preferred interest can help a person meet other like-minded people who share their passion for that activity.

My children began volunteering every summer at a Farmer’s Market at ages 11 and 13. At that job, they learned how to report to a manager, follow simple instructions, carry out tasks in a specific order, practice conversation skills, problem solve, be punctual, and how to look presentable at a work site.

Julia, now 18, is successfully volunteering at a cat care facility. She has wanted to work with cats since she was 13 years old. Because she came to that position with her experience from the Farmer’s Market, she knew how to sign in for work, report to a manager, and perform in tasks in a specific order. In essence, she had gained critical mass from the other job to be able to do this one successfully.

Find Motivation
 
Not everyone is motivated by money, nor is it always meaningful to people with an ASD. What can be meaningful is creating an understanding of what money can do for you. When my children began volunteering at such a young age, I wanted them to understand the concept of what working a certain number of hours meant. At the Farmer’s Market, the shift was 3 hours, one day a week. I created a work chart for the shifts so that each time they worked a shift, they got a check mark. At the end of the month, they had 4 check marks, enough to choose a toy or DVD. They could also bank those check marks to get something more expensive. Both children knew what they were working toward, which kept them motivated. They also learned that they had to work more shifts to buy something more expensive.

They still don’t understand the concept of money, but do understand the concept of spending time at a job to earn something they really want. Money is not necessarily a motivator for people with ASD, so think about creating other ways to inspire them.

Redefine Work
 
When talking about employment, it seems to be with the goal of full time work. For some adults with ASD, this may not be achievable. Look at part-time work, shorter work days (just a morning or an afternoon), entrepreneurship where you can make your own hours, or some volunteering at a place where you can build skills. For example, I have been investigating a charity that helps mothers with young children. This charity has a number of initiatives, but their main one is cooking and preparing meals for the moms. Since Julia has an interest in cooking and wants to gain skills in this area, this could be a win-win. In time, it could lead to a job with another organization.

Employment Training Programs
 
We recently pulled our daughter from a government-sponsored training program geared toward people with autism. I was surprised at how the program was run. The participants were taken to a new job site every week, which caused great anxiety. The job sites were not chosen based on a person’s interest or ability, but rather where the program coordinator could find a business that would allow people with autism to try a job. Some of the places were Goodwill, a mattress recycling plant, and a busy concession stand at a stadium. After the second week, my daughter said to me, “Mom, these jobs don’t make any sense for people with autism. We have difficulty communicating, but we are dealing with customers, which is really hard for us.” So that was the end of that.

These programs are also not helping the participants find meaningful work after the training is over. For my son, I was given a list of places to approach after his job training finished. It’s going to be very hard to approach these businesses on my own while trying to find a job for my son; he does not have the ability to do it on his own.

The Resume and Job Interview
 
Due to a lack of traditional work experience in the teen years, putting together a resume for individuals with ASD can be challenging. Think about creating a non-traditional resume of skills and interests. Because both of my children have difficulty communicating, I plan to do this with visuals. I will use photos of things they have done to be able to show a potential employer that they do have skills and interests that could benefit a business. Photos or other visuals could also help in an interview or intake process because high anxiety can cause a communication shutdown. I took the last 6 books my son had read to his intake interviews because he just couldn’t answer questions or speak due to nerves. It showed the interviewer that he could read at a high level and read a wide variety of topics; it was impressive.

Entering the world of work is a long-term process. Take small steps and try to find the best way to build skills through ongoing practice at activities. Try and have as many experiences as possible, because each experience can give you something that could help with future employment.

Further Reading
 
Teaching Pre-Employment Skills to 14–17-Year-Olds

Creating the World of Work

Deborah Barrett

Last week, Anthony at Your Service received a call from a woman in Missouri. “I don’t want to order a delivery,” she said, “ I have a 15 year old son with autism, and I’m worried about his future, especially once he leaves school. I found Anthony at Your Service online, and I’m so impressed. My son seems a lot like Anthony. Could I talk with you about what it takes to start a business like Anthony at Your Service?”

The woman from Missouri faces many challenges. Her son has autism. He is non-verbal with intellectual and motor co-ordination challenges. Day programs in her area are either non-existent or have extensive waiting lists. She doesn’t see group homes as being suitable for her son. As in Alberta, further education opportunities for his ability level do not exist. She also recognizes that it will be virtually impossible to convince an employer to take a chance on giving her son a job. For her, Anthony at Your Service is a light at the end of a tunnel. It gives her hope that there might be a future for her son that means he will use his skills and strengths, that he will feel productive and proud, that he will be involved in visible, paid work that is valuable to others, and that he will have a network in the community that stretches beyond his family.

This mother wanted to chat, to start thinking about what it would take to start a business for her son. But it wasn’t just the nuts and bolts, it was really thinking about what a business for an individual like her son has to do. Before opening itself to the public, a small business like Anthony at Your Service needs to understand what it is trying to accomplish, especially in terms of the person or people who are the starting point for its existence. As I told this mother, it really doesn’t matter if her son can put on his coat by himself, what matters is that he has a good life. A business can be built to accommodate that.

In starting Anthony at Your Service, we had to identify what Anthony loves to do, what he’s good at and what challenges him, criteria I learned from my friend Roma Kurtz. Anthony loves to drive around listening to music, he likes seeing new things but he doesn’t like to stay long, he likes carrying things and he likes helping. Social skills are a challenge, but something that can be managed for brief periods of time. Taken together and mulled around for some time, we eventually thought a delivery business would be a good fit for Anthony. Like many people with autism and intellectual disabilities, though, Anthony cannot work a full eight hours. Figuring out how to accommodate that once Anthony at Your Service got busy was essential.

Small businesses also need work done in the back end. In our case, responding to phone calls and emails, scheduling, invoicing, advertising, payments and deposits are all jobs someone, who is not Anthony, needs to do. When the business grows, thought must also be given as to how jobs that come in simultaneously will be dealt with. Will there be a need for additional people with autism who will serve as additional service agents? If they are not available all day long, or if they don’t have support staff all the time, how will their work schedules be accommodated?

There are all sorts of challenges when starting a business for a person on the spectrum. Fortunately, parents who are raising children on the spectrum are already good problem solvers. They already know what a good life means for their child, and they already know how to create accommodations so their son or daughter can succeed. This means they are well equipped to solve the problems inherent in starting a business for their loved one.

When Anthony was 15, I was also worried about what his life would be like after high school. There didn’t seem to be any options that would offer him the quality of life we wanted for him. I kept hoping something would develop by the time he turned 20. I didn’t realize at the time that I would be the one to take that on.

Today, Anthony owns a business in which he works, takes iPad, reading and computability classes, works out regularly, goes swimming, has social opportunities and plays his favourite game (repeatedly) on his computer every day. Many in his city recognize him fondly. They clearly support what he is doing. I shake my head in awe of how a gentle, primarily non-verbal person has managed to create a pretty good, balanced life for himself.

After five years, Anthony at Your Service provides visible, paying jobs for 18 people with autism and intellectual disabilities. I’m not sure it’s for everyone, but starting a small business for your child or loved one on the autism spectrum is one way to create a good life for him or her, and by extension the family. Starting a small business leads the way and opens doors to creating more opportunities for others with similar disabilities, and ultimately it creates better lives for all.

Autism Edmonton and the Autism Research Centre 2018 Graduate Student Pilot Grants

The 2018 Graduate Student Pilot Grants will support individuals conducting graduate research in any field related to Autism Spectrum Disorders to begin May 2018. These grants are jointly funded by Autism Edmonton and the Autism Research Centre at the Glenrose Rehabilitation Hospital (affiliated with Alberta Health Services and the University of Alberta). Each grant of up to $5,000 is to be applied towards the operating costs of the successful applicant’s or applicants’ graduate research project. Applications will be judged on the quality and originality of the proposed project, and on the potential of the research to contribute to the well-being of persons with ASD and their families.

Deadline to apply is March 31, 2018.

Funding for May 1, 2018 to April 30, 2019.

Application procedure:
 

To qualify, the student must be enrolled in a graduate level university program (Masters or PhD) in the Edmonton area, and be returning to their graduate studies program as a full-time student in the fall of 2018. Students who are about to begin their 1st year of a graduate studies program must include a copy of their letter of acceptance into a relevant graduate program for the fall semester.

We Want To Hear From You!

We are looking to publish stories, event notices or news items from all parts of the province. If you’d like to have your items included in the March 2018 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of March 15.

New at Autism Edmonton: Launch Into Life!

Although we most often hear about autism in children, it is important to emphasize that autism does not affect just kids. Autism is a lifelong condition which does not go away in adulthood. Children with autism grow up to be adults with autism. But very often, as they grow up, they struggle to fit into society, find work and live on their own.

Adults with autism face major hardships in their lives, especially in the absence of supports and services. These challenges have significant implications not only for the individuals themselves but also for their families and society at large. The following are a few examples.

  • High unemployment – It is estimated that over 80 percent of Canadians with autism are unemployed. Moreover, research shows that young adults on the spectrum are more likely to be unemployed than their peers with other disabilities.
  • Social isolation – Facing a lack of understanding from society, people living with autism and their families often become isolated and develop mental health problems.
  • Low life expectancy and high suicide rates – For people with autism in Sweden, for example, life expectancy is a mere 40 years, and suicide rates are elevated. Research in the US shows that 66 percent of adults newly diagnosed with Asperger syndrome report that they have contemplated suicide.
  • High dependence on families – Most often parents are the primary caretaker, educator, and financial supporter of their children with autism. But what is going to happen to these individuals once their parents are no longer able to care for them?
  • Unfulfilled potential – Given their unique capabilities in sciences and arts, people with autism can provide unique contributions in a number of areas. When left untapped, this unfulfilled potential represents a huge loss to society.
These challenges and unmet needs are real and deserve the recognition and attention of everyone. How can we work together to help adults with autism have the best possible quality of life? It is critical to ensure that children with autism can successfully transition into adulthood, find a job, get involved in the community, find a place to live, and continue education.

To help families plan and prepare for their child’s transition to adulthood, Autism Edmonton is excited to offer Launch into Life! – a set of workshops designed to help families of youth with autism prepare for and respond to key life transitions and create an Individualized Transition Plan.

Click here to learn more

10 Toy Ideas For Children With Autism

Rachel Pagaling
I believe that one of the best ways to educate a child is through play. Researchers have advocated for more frequent play time, as it contributes to healthy brain development and can increase cognitive, physical, and emotional strength in children (Ginsburg, 2007). As a speech and behavioural aide for children with ASD, I am always on the lookout for new ideas or toys that could make my sessions more exciting and engaging for the children I work with. Through trial and error, here are the top 10 toys I love to use when I work with children with autism.

1. Spelling Puzzles. I like using spelling puzzles in my sessions because the puzzles include fun pictures of everyday objects, and the kids are able put them together while practicing their reading and spelling skills. These puzzles are also great for sounding out letters and short words for children who need extra help in the speech department.

2. Pop Snap Beads Set Jewelry. The girls I have worked with love these pop beads! The beads come in all sorts of colours and shapes, making the jewelry possibilities endless! Pop beads are also great for tactile sensation and practicing fine motor skills.

3. Connect 4. When I first introduce to kids the concept of taking turns, I always go to Connect 4. It’s a fast turn-taking game that does not require too much thought, and kids can see when the coins are placed into the frame, which is great for practicing counting.

4. Scatterpillar Scramble. This game features music and dancing, and is great fun for everyone (including parents)! This game is great for taking turns and practicing fine motor skills. I love this game because its difficulty can be easily modified depending on the child’s age. For example, tongs are used to remove the balls from the caterpillar’s hands, but this may be hard for younger children – so when I start this game for them I turn the caterpillar off and let the children use their hands instead of the tongs.  

5. Jenga Blocks. Jenga is another great turn-taking/fine motor game, but there’s more to Jenga than just pulling the blocks out one by one and stacking them on top (and hoping you’re not the one to make the Jenga tower fall). There are many other things you can do with Jenga blocks! You can practice counting with them, set them up as dominoes and watch them fall over, and even build tall creative towers.

6. Pop Pop Pirate. Pop Pop Pirate is also another turn-taking game that is fairly easy to set up. To play the game, each player slides their sword into a slot, but watch out – put your sword in the wrong slot and the pirate pops off, flying into the air! Pop Pop Pirate is one of my favorite anticipation and surprise games to play.

7. Perfection. Perfection is another easy-to-set-up matching/surprise game that is great for younger children. You have to put all the shapes in their designated spot before the timer goes off and pops all your pieces off! This game builds motor and shake recognition skills for younger children.

8. Basic Skills Board and Puzzle. This board puzzle is great because, in addition to the bear puzzle, it also has different pieces that help children practice their fine motor and life skills – skills like putting on a button, tying strings, and putting on a belt.

9. Sensory Brushes. The bristles are very gentle and give the child tactile stimulation to help sensory-seeking children calm down. They can also help with concentration. When I see that a child needs a quick sensory break during an activity, I usually brush the child’s back, arms and legs a few times, and this helps with their sensory needs.

10. Slime. Slime is also great for kids who need a sensory break, and plus it’s easy to clean. Kids can stretch it, squeeze it, and manipulate its shape to whatever they please. Slime comes in different colors and sizes; some slime containers even have glitter in them! You can even make slime at home. An alternative to slime is magnetic sand. However, magnetic sand can get pretty messy, but keeping it in a large plastic container will help reduce the mess.



References:
Ginsburg, K. R., and Committee on Communications, and Committee on Psychosocial Aspects of Child and Family Health, American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family Health, American Academy of Pediatrics Committee on Communications, and the Committee on Communications, and the Committee on Psychosocial Aspects of Child and Family Health. (2007). The importance of play in promoting healthy child development and maintaining strong parent-child bonds.Pediatrics, 119(1), 182-191. 10.1542/peds.2006-2697

Discovering Autism Conference 2018

 
An Interdisciplinary Educational Conference for Students, Educators, Parents, Support Staff, and All Others Affected by ASD

TICKETS: $20

BUY TICKETS NOW at our website:
www.picatic.com/discoveringautism

Who Will Take Care of Our Kids (When We No Longer Can)? – Part 7

Carolyn Dudley & Shino Nakane

In this final installment of Who Will Take Care of Our Kids, we look at what innovative ideas exist to address the current lack of services for adults with ASD.

When asked about innovative ideas to improve the system, stakeholders referenced a wide range of initiatives. The initiatives they mentioned depended on which sector they worked in, and from which perspective they spoke – parent/guardian, individual with ASD, government worker, or agency.

Emerging Technology
The role that technology plays in our world today and will play in the future cannot be ignored. Businesses are emerging that provide solutions where technology may replace the need for some tasks currently performed by front line workers.

“We need to make the lives of both individuals with ASD and their caregivers better. Caregivers cannot possibly provide 24/7 support, especially when they start to age themselves. Technology will free them from some of those responsibilities and likely be more inexpensive than hiring staff.”
– Stakeholder Quote

There are software programs currently being developed using radio frequency identification (RFID) that employ electromagnetic fields to automatically identify and track tags attached to objects. The hope is that this technology will be able to support an individual with ASD in their home. This high-tech program will be able to prompt and remind clients to perform tasks and offer some security features. The rollout of this technology should take place in the near future.

Insurance Plan Approach
 
The Every Canadian Counts coalition is reviewing research on the use of insurance to cover and ensure lifelong quality supports. Government initiatives that establish lifelong supports for individuals and families and use other methods to finance these services could make lives better for persons with disability. In the province of Quebec the government proposed an autonomy insurance plan to address the long-term care needs of an aging population, including those with lifelong disabilities. Autonomy insurance is an innovative social project intended to address the increasing demands on a system that is complex, inadequate and difficult to access for some. This solution may not benefit those who are already older or elderly, but could provide a long-term solution for future needs.

Mentorship and Visuals of How-To and Toolkits
 
The need for mentorship was discussed in the “What Are the Gaps?” section. There is a need to match families and individuals who have similar levels of support needs and capacities with those who have had success. One stakeholder suggested a visual presentation that illustrates a series of models to help families see how others have actually developed, implemented and sustained a lifelong quality model. Whether this might exist elsewhere or even in Alberta would require further investigation.

Other stakeholders noted there was a need for a toolkit on how to start your own group living home (or other models). Many agencies stated that families would like to have step-by-step instructions about how to create these supports. Another area of concern was the often-forgotten guardians or caregivers who take over from parents. One stakeholder wanted to see a toolkit for people who become legal guardians while initially having minimal knowledge about ASD. This stakeholder believed it was essential to offer more support networks and counseling programs for these individuals.

One-Stop Shop for Families
 
The concept of one person (a coordinator) or agency that could offer all services and information needed to help families is also worth considering. These accessible “one-stop shop navigators” could help families understand and plan all aspects that encompass a sustainable quality of life for their ASD child. This could include, but would not be limited to: financial planning, service planning, hands-on assistance with filling in and overseeing forms, hand-holding and step-by-step help to create housing, along with many other tasks to oversee quality lifelong support. A new initiative was discovered in Calgary providing a one-stop coordinator, but this service was for anyone in need (with or without a disability), and the providers did not want to advertise the service because they were already overwhelmed.

“Perhaps the government needs to not just change policies, but also put resources into helping families with the planning process. Families can steward responsibly and meet moral and legal obligations in ensuring a sustainable quality of life for their child.”
– Stakeholder Quote

Specific Effort to Advocate for Quality Sustainable Housing
 
Housing-specific initiatives were noted by one key stakeholder who recommended a number of initiatives that need advocacy. Some specific ideas were to:

  • Increase the use of social impact bonds
  • Allow use of the RDSP as a down-payment for housing
  • Create life leases where an individual has the right to occupy a specific space at a fixed rate in perpetuity
  • Create a national or provincial housing trust – a trust fund administered by a non-government body that gives people the ability to bequeath a smaller amount of their estate to housing
  • Create a rent subsidy program, similar to the one in Quebec
  • Enshrine the right of housing into the Canadian Charter of Rights

Related Ideas
 
The ideas below were offered by stakeholders in this consultation. They are not necessarily new ideas, as advocates have been asking for these changes for some time; however, they are worth repeating. It should be noted that there are likely many other initiatives that have been put forward as areas in need of change.

  • Increase research efforts on aging individuals with ASD and their elderly parents. Very little is known about older adults and the issues elderly caregivers face.
  • Lobby government to provide more funding and programs for adults in all areas of daily living and increased independence, plus mental health supports, career and volunteer guidance, and social skills.
  • Lobby government to change IQ score eligibility so higher-functioning adults can qualify for services.
  • Lobby federal government to increase the RDSP contribution to exceed the current $200,000 amount. The government should also continue to ensure that RDSP contributions are not considered assets, and so do not impact income support program amounts.
  • Lobby government to increase exemptions in different areas, such as allowing families to put funds into an annuity.
  • Lobby the government to create a program that incentivizes parents to keep their adults with ASD at home. Compensate parents and encourage families to continue looking after their adult in their own homes, if they wish to do so. However, this can only be viable with added (and still unavailable) supports like out-of-home respite programs, easily accessible in-home respite, and additional services that help aging parents.

Conclusion
The ASA board set out to understand what programs and supports currently exist to take care of our kids when families can no longer do so. Although good examples of quality, sustainable life exist, they are not easily accessible, may be difficult to duplicate, and are not meeting the growing demand.

For the moment, the best way forward would be for families to have aspects of a number of the “things that are working” in place. For example, in the ideal situation a family would contribute financially to an RDSP on a regular basis. They would obtain a quality housing situation with a quality service provider that involves parents in decisions. There would be a clear support plan template in place and an identified network of support people. They would do all this while living in a province where a trust could be set up that would not impact income support payments. This would likely be, at this time, one of the best scenarios possible. Clearly, this is difficult to create and requires extensive knowledge, capacity, financial ability and time from the aging parent. For many, this is unrealistic.

Autism spectrum disorders present an especially challenging situation, as individuals have a wide range of ability, layered with possible medical and mental health challenges, as well as sensory and behavioural issues. All of these factors are then combined with aging and tired families with variable mental, medical, and financial capacity. The system is fragmented, and agencies, families and individuals everywhere are reinventing the work that may already be done elsewhere.

Families often fall between the system’s cracks, and many come face-to-face with this when a crisis arises and there is an absence of needed supports. This may be especially true for families that lack capacity to take action early on for their loved ones. Even for families who have a high level of capacity, the lack of direction and the time needed to seek out the required supports to create this life leave families overwhelmed and unsure of how to proceed.

Many organizations are trying hard to answer the question the ASA board set out to understand. There is progress being made, and each day new and hopeful innovations and connections are being made throughout Canada.

“You have to keep trying and give families a sense of hope. Hope is the one thing that helps families continue on their journey.”
 – Stakeholder Quote

This project has revealed important resources and programs. This report attempts to convey a sense of hope that positive movement is occurring, while at the same time highlighting a sense of urgency that families are struggling and a better way forward must be created.