Insecure – Advocating Never Stops

I recently had a very upsetting thing happen. My adult autistic son’s daily living and medical benefits were abruptly terminated. I learned of this by hearing a brief message left on my phone. The person from the AISH benefits office said my son no longer met the eligibility criteria for his benefits because his assets amount was too high.

We started a Registered Disability Savings Plan (RDSP) for Marc 9 years ago. This federal government program is a savings plan intended to help an individual who is approved to receive the disability tax credit (DTC) to save for their long-term financial security. An RDSP is income exempt, meaning it is not counted as income and does not affect a person’s monthly living allowance benefit. It raises the question of why this even has to be submitted to any benefits office since it is asset exempt.

In Marc’s case, the RDSP was counted as part of his total assets so he was terminated from benefits with no warning. I was so upset because I knew what the error was right away and that it is unlawful to count the RDSP as an asset. I panicked, not knowing at first how to fix this situation.

My first call was to the executive director of my local autism society. He was well informed on policy and procedure and gave me the background information I needed to advocate for Marc. The AISH office recently had a 3% administrative budget cut, so office operations were completely restructured. No clients have caseworkers anymore, leaving us with no person as a point of contact. Marc had the same caseworker for 10 years. No one answers the phone at the AISH office; only messages can be left in a general mailbox. The office says they now use a “team” approach. The autism society executive director said to waste no time – file an appeal and call my Member of the Legislative Assembly (MLA).

The following morning, I called my MLA’s office. It was the best and most effective call I could have made. The administrative secretary listened to my concerns and offered action right away. She sent out my concern to all constituencies in the province to see if this had happened to anyone else. Both the shadow minister and the Minster of Seniors, Community, and Social Services were contacted and made aware of Marc’s case. My MLA was going to stand by me and work on behalf of my son to get a speedy resolution. In the meantime, she suggested I start an appeal. The appeal process takes several months to resolve which would leave my son without benefits. The medical benefits were particularly worrisome because Marc has a complex medical issue that requires a costly monthly injection.

Early in the afternoon, the senior manager from the AISH office called me to say she received a call from the minister and was looking into Marc’s case immediately. When looking at his documentation, she said she could not tell that what I submitted from my financial planner was an RDSP. I stated that if there was a question regarding clarification of a document, why would you not just make a quick phone call or send an email rather than jump to termination of benefits? I have been sending the same documentation to this office for 10 years. I directed the manager to call my financial planner to get clarification, even though I had already sent a letter from her to verify this investment was indeed an RDSP.

About 30 minutes after that call, I received an email from the AISH manager saying Marc’s benefits were reinstated. Even though there was a positive and quick resolution, it got me thinking about what would have happened if I were dead, incapacitated, or unable for some other reason to advocate for my son. Who would have remedied this? If he was not living at home, how would he have paid his daily living expenses such as rent, food and utilities? What about coverage for his medications? The recent AISH restructuring left us with no caseworker or knowledgeable staff to assist my son. There was no one answering the phone; no person to contact. It was a dehumanizing process. Will the same thing happen to my younger adult autistic daughter too when her RDSP reaches a higher amount in the near future? This experience taught me that you can lose what your child is eligible for in a day with no questions asked.

Advocacy is everyone’s responsibility to ensure a fair and equitable society. Advocacy is about securing, protecting, and advancing the rights of one’s self or others. All programs and services must be in compliance with current legislation and regulations. Parents and self-advocates, however, may have to strongly advocate to ensure that their rights or their child’s rights are met; the support people around them have to speak up too.

Most effective advocates share a combination of important knowledge and skills:

• An understanding of regulations and rules
• An understanding of the law
• A sense of procedural advocacy
• A realistic sense of what they want and how to work with others to achieve their goals

There are large collective voices representing autism such as autism societies across Canada who are dedicated to providing quality information and education, supporting research and advocating for programs and services for the autism community. They provide autistic people and their families practical strategies to support their role as advocates as they navigate the system. My autism society certainly fulfilled that role for my family.

The Seven Principles of Advocacy

These seven principles of advocacy come from the Holland Bloorview Kids Rehabilitation Hospital’s Advocacy Toolkit. While these principles may seem overwhelming at first, over time you’ll develop the necessary skills to be an effective advocate. I’ve had over 25 years of experience and practice advocating for my children which is why I knew who to contact for advice when my son’s benefits issue arose.

1. Take responsibility – Parents and guardians are responsible for their child’s future. Set goals and develop a plan of action. As the child matures, include them in the decision-making process as much as they are able to.
2. Educate yourself /become an expert – Make a reading list, know educational policies and protocols, build a network of experts to call upon, attend conferences, webinars and workshops. Many are offered for free by community organizations.
3. Think critically – Read, evaluate, and try to understand all of the information before responding. I often don’t respond right away and give myself 24 hours to get into a calmer state. Think about your goals, make a list of pros and cons, and be prepared to reach a compromise. Sometimes budgets, staffing and resource capacity limit what an organization can provide.
4. Speak with authority and be proactive – You know your child best so take the first step. Ask for a meeting, provide helpful resources, and have documentation. Speak confidently and take notes.
5. Document – Keep meticulous notes with dates and what transpired. Documentation helps you feel prepared and organized. You can refer to your notes in meetings. Information can be stored digitally or on paper in a file. I tend to do both in case my digital system fails me on the day I need it.
6. Collaborate and be a team builder – The aim is to achieve your goals with everyone. A team approach makes advocacy work stronger and more effective. Contribute and volunteer when possible. Allow an organization to ask for your help and advice. I use to loan resources to the schools my children attended.
7. Educate and be the voice for your child – Share your stories and resources. Sensitize others to the needs of your child. I have done this with groups I am a part of that have nothing to do with autism such the public library, my skating club, and a chamber music festival that I volunteer for. I need to be able to call on the people I work and play with to help me when I’m fighting for my children.

Advocacy will happen across a person’s lifespan as nothing is guaranteed. Governments change, organizations evolve, budgets get cut, and new policies and guidelines get put into place. Set your advocacy goal, put a plan in place, understand all perspectives, and reach out of for help. Had I not done what I did for my son, we would have been without supports for several months. I am grateful for the guidance of my local autism society and the quick response and advocacy work of my MLA. It made me feel like my government was working for its most vulnerable citizens.