Summary: A rambling conversation with Linsey about the challenges, both emotional and systemic, of being an advocate for a loved one who becomes ill or disabled.

Guest: Linsey, a healthcare worker who has also been a health care advocate for a family member.

Feedback: navigatingdisabilitywithme@gmail.com

Notes:

1. How do many families feel when facing being an advocate? Family members want to provide love and safety so they may feel anxious and vulnerable, or feel out of control. They're being asked to make important decisions for a loved one when they are in shock themselves.
2. Write things down - team meetings, updates from staff etc.
3. Take time to process new information but also don't hesitate to ask questions.
4. Most hospitals/organizations will ask you to appoint one person as the advocate/decision maker.
5. How do you think one should go about selecting an advocate? What values should they have and what discussions should you have with them ahead of time? Is a medical professional necessarily the person to choose?
6. If you can select an advocate ahead of time make sure they share your values. Are they strong under pressure? Do they have good communication skills? Are they able to ask questions and stand up for you? Medical knowledge is a plus but not a necessity. Ask yourself how does this person emotionally regulate? Can they stay grounded when stressed?
7. Advance directives/living wills can be temporarily overridden or delayed by grieving families. Which is why you need a grounded advocate with good communication skills to look out for your wishes.
8. Talk to your family/advocate about your values and wishes!
9. As a health care worker, what do you wish families understood about our health care system?The system is stretched and it's imperfect. Both money and practitioners are stretched thin.
10. Gaps are not intentional - whether it's in care or communication. Practitioners are doing the best they can.
11. Families often have to ask the same question more than once due to the fragmented system. Try to not get frustrated!
12. It's not fair but families and clients have to be patient and polite. Remember that staff often feel like their hands are tied in being more effective due to workload.
13. As a granddaughter, what surprised you about how the system actually feels?
14. Waiting for things feels like it takes forever. The impact of emotion is so much bigger when it's your family member. There's a struggle with what the outcome will be. It's hard to let go of staying at her bedside overnight when you know all the steps that must be taken for high quality of care, to trust that they'll all be done.
15. What did you think you knew professionally that turned out to be incomplete when it was your own family?
16. You understand the process but it's exhausting to live through the emotional impact. Big time decision fatigue. Gave new understanding of why family/advocates need time to make decisions. Surprised by how much support other family members would need. The stamina needed was significant. The experience built empathy for patients and families.
17. The importance of trauma informed care became obvious. Frankly all people/professions could benefit from trauma informed care training
18. What are common mistakes families make when advocating?
19. It's the care team's job to lead and react, not the family's job to be "easy". But don't wait too long to speak up with questions and concerns! Always be polite and non-aggressive. The team knows that the aggression/yelling etc. is from a place of fear and loss of control, however, it makes a tense situation worse.
20. Any aggression is flagged and all team members are made aware, so don't get yourself flagged this way.
21. Look out for yourself through all this: sleep, food, sunshine etc. Talk to someone about what you're going through.
22. Look to the social worker for help on emotional but also practical issues.

Summary: A review of some of the remaining federal programs for disabled people: the Canada Disability Benefit and the Canada Caregiver Tax Credit, as well as the GST/HST rebate. Actual topic starts at 10:06 post all sorts of chat on various topics.

Feedback: navigatingdisabilitywithme@gmail.com

Links:

1. Tody app: https://apps.apple.com/ca/app/tody/id595339588
2. Canada Disability Benefit
   1. Apply online: https://www.canada.ca/en/services/benefits/disability/canada-disability-benefit/apply.html#h2.2
   2. Calculator: https://www.canada.ca/en/services/benefits/disability/canada-disability-benefit/amount.html#h2.5
3. Canada Caregiver Tax Credit:
   https://www.canada.ca/en/revenue-agency/services/tax/individuals/topics/about-your-tax-return/tax-return/completing-a-tax-return/deductions-credits-expenses/canada-caregiver-amount.html
4. GST/HST tax refund:
   https://www.canada.ca/en/revenue-agency/services/child-family-benefits/goods-services-tax-harmonized-sales-tax-gst-hst-credit.html
5. North Shore Disability Resource Centre resource guide for a good list of all federal benefit/tax programs: https://nsdrc.org/resource-guide/

Tips:

1. Canada Disability Benefit: In Canada, over 1.5 million people with disabilities lived below the poverty line in 2022, representing 1 in 6 people with disabilities. This benefit is supposed to help lift disabled people out of poverty.
2. The official poverty line is a set of 66 different thresholds based on the Market Basket Measure which determines the cost of a basic modest standard of living. Calculated to be approximately $2000-$4300/month, depending on where you live in Canada.
3. These "poverty lines" are often not very realistic as compared to actual cost of living.
4. Maximum income to get full benefit of $200/month is $23000 for a single person and $32500 for a couple.
5. If you're working they give an exemption for the first $10000 for a single or $14000 for a couple of income.
6. For 2025-2026 if you make more than this you won't qualify for the CDB:
   • Single Individual:
   • • $35,000 or more (if you have no working income).
     • $45,000 or more (if you have at least $10,000 in working income, utilizing the maximum exemption).
   • Couple (Only one person eligible for CDB):
   • • $44,500 or more (if no working income).
     • $58,500 or more (if you have at least $14,000 in combined working income).
   • Couple (Both eligible for CDB):
   • • $56,500 or more (if no working income).
     • $70,500 or more (if you have at least $14,000 in combined working income).
7. Qualifying: must have the DTC, have filed tax returns and have Canadian residency.
8. There can be back payments of up to 24 months
9. Wouldn't it be nice if the federal government just had one central application for all disability benefits???
10. Canada Caregiver Tax Credit is a non-refundable tax credit.
11. Who qualifies: Caregivers supporting a spouse, child, grandchild, parent, grandparent, sibling, aunt, uncle, niece, or nephew with an impairment.
12. Amount varies based on who you're supporting and how old they are. For 2025, you can claim anywhere from $2687 plus an additional $8601 depending on household circumstances. Varies if the dependant is a child vs and adult dependent vs a spouse. (Actual dollar amounts cut from episode as it was too confusing).
13. The CRA may require a signed statement from a medical professional confirming the impairment.
14. GST/HST refund - not disability specific but low income. A federal tax-free quarterly payment that helps individuals and families with low or modest incomes offset some of the GST or HST they pay. Eligibility is determined automatically each year when you file your tax return.
15. North Shore Disability Resource Centre has a good resource guide of all federal benefit/tax programs. Look for similar in your city.

The Appeals - CPP D part 3

Lots of banter at the start! Episode (on topic information) starts at 7:40 mark.

Feedback: navigatingdisabilitywithme@gmail.com

Links:

1. CPP Benefits - Request a reconsideration: https://www.canada.ca/en/services/benefits/publicpensions/cpp/request-reconsideration.html
2. Social Security Tribunal CPP-D Appeals Process at a Glance (this has the algorithm we keep talking about): https://www.sst-tss.gc.ca/en/your-appeal/canada-pension-plan-disability-appeals-process-glance
3. Disability Alliance of BC: www.disabilityalliancebc.org
4. North Shore Disability Resource Centre: www.nsdrc.org
5. My Service Canada sign in: https://www.canada.ca/en/employment-social-development/services/my-account.html

Tips:

1. Expect to be rejected on your first application as only 40-45% of people are approved for CPP-D on their first try. Don't let this stop you!
2. With every step of the appeals process a significant percentage of people get approved.
3. Top reasons for rejection: Disability is not deemed "severe or prolonged", Insufficient medical evidence, Failure to meet CPP contribution requirements, Late application, Incomplete application.
4. Social Security Tribunal CPP-D Appeals Process at a Glance (link above) walks you through the entire appeals process, with timelines.
5. First appeal (step 1) is within Service Canada/CPPD itself. 40% of people who are rejected pursue this step. 35% of those who appeal to Service Canada are then approved.
6. Second appeal must be done within 90 days of Service Canada refusing your first appeal. This is the Appeal to the General Division of the Social Security Tribunal. 45% of people who fail their first appeal will move to this step. This step (step 2) can take over a year. 65% of those who go to the Social Security Tribunal were approved for CPPD. Another 45% are successful after appealing the rejection of the Social Security Tribunal (step 3).
7. If you're refused CPPD after working through all the steps at the Social Security Tribunal the last step is to take it to court.
8. Reach out to disability advocates such as The Disability Alliance of BC or The North Shore Resources Centre (or whatever is local to you). Many have mentors who can help walk you through applications and appeals.
9. My Service Canada (sign in to your account) has a calculator for how much you're likely to be paid on CPPD.
10. Your CPPD is likely to be clawed back by any long term disability benefit you're receiving. Remember that the protection of your pension, the endorsement by the federal government of canada as a disabled person, and many other benefits still make this worthwhile to pursue.
11. CPPD is taxable. Ask them to take taxes off (in My Service Canada), or save the money to pay back at tax time.
12. There are small increases in CPPD annually for inflation (like 2%).
13. You are expected to stay on CPPD unless a very significant change/improvement happens to your health.
14. For 2025 you could earn $7600 in extra income (not including LTD).
15. You must tell the government about any work/schooling/volunteering that goes on for more than 15 hours/week for more than 4 months.
16. You must inform the government of changes in personal life such as changes with children, as you are likely getting a CPPD benefit for each child.
17. When you turn 65 CPPD turns automatically into a regular CPP pension. The amount you receive will change.

The What and Why of Canadian Pension Plan Disability

Feedback: navigatingdisabilitywithme@gmail.com

Links:

1. Government of Canada webpage for Canadian Pension Plan Disability Benefit: https://www.canada.ca/en/services/benefits/publicpensions/cpp-disability-benefit.html

Tips:

1. CPP-D is for Canadians who have contributed to The Canadian Pension Plan and have a severe and prolonged disability.
2. As of 2025 you are limited to earning $7100 (gross before tax) before you have to notify CPP of your earnings, at which point they will assess if you are capable of doing regular work. This limit goes up with inflation (2026 it's $7400).
3. Benefits may be impacted once you pass $7100 in income. Once you go over $20 153 it's likely you'll be cut off CPP-D. (2026 it's $20 971).
4. Yes, it's mainly employment income that the CRA is looking at here. From googling we've learned that the CRA of course knows about your investment income anyway, from your taxes.
5. CPP-D does not fully replace your income. It's a small percentage. The average CPP-D income per Canada.com is $1192/month.
6. ⅙ of Canadians with disabilities live below the poverty line.
7. If you're on Long Term Disability that insurance company will likely claw back all of your CPP-D (or will drop what they're paying you by exactly what you get from CPP-D).
8. So why apply for CPP-D?
   1. CPP-D is often the key to getting into other programs and benefits.
   2. CPP-D tells insurance companies that provide LTD that you are recognized as a severely disabled person, making it harder for them to deny you your LTD benefit (this is what's been experienced by doctors and patients, but is not any sort of official rule).
   3. CPP-D tells the government you aren't choosing not to work and therefore the government protects your CPP (the actual pension), allowing you to get the full pension when you retire.
9. CPP-D pays on the third to last day of the month.
10. CPP-D is calculated as: a base amount that everyone gets, plus a portion that's income based ("CPP pensionable earnings").
11. If you had to take time off for child rearing they will adjust the calculation so that it isn't punitive.
12. CPP-D benefit goes up a (very) small amount every year.
13. There's an additional benefit in CPP-D for your children.
14. You will speak to CRA workers during the application process, they will give you time frames and phone numbers to watch for.
15. The application processing will take longer than they say it will.
16. Application requires you and your doctor/primary care provider's input. You will need names of medications, tests, symptoms etc., along with amounts, dates, places etc.
17. Only 40% of applicants to CPP-D are approved the first try. Be thorough when filling in the forms!