Friday, 8 January 2021

DISABILITY PLANNING FOR MY CHILD: HOW TO BEGIN NOW




I talk to lots of different people who have a role in supporting families of children with disabilities. This week, I had an interesting chat with Bruce Maier, a financial advisor and managing partner of Iron Birch Advisors, a division of Ameriprise Financial Services. Bruce is based in New York City and leads his team's practice serving special needs families. Bruce teaches and mentors both other financial advisors as well as families in all aspects of financial planning for a safe and secure future. If families would like the benefit of Bruce's experience and advice, he generously offered his contact details for that purpose: 

Bruce Maier, MBA, ChSNC®
Financial Advisor Managing Partner

 

 

IRON BIRCH Advisors
A financial advisory practice of Ameriprise Financial Services, Inc.


O: 212.759.2013  M: 201.407.6631

CA Insurance License #OI43753

https://www.ameripriseadvisors.com/bruce.maier/

For future planning advice and information in Canada and certain cities in the USA, contact the PLAN Institute. PLAN is a family led organization dedicated to helping parents answer the question, "Who will care for my child after I die?" PLAN also offers Canadians a Disability Planning Helpline: 

1-844-311-7526

Call the helpline anytime from anywhere in Canada and one of our family experts will answer your questions about the Disability Tax Credit, the Registered Disability Savings Plan, trusts & estate planning, advocacy approaches, government benefit programs, social network building and more. *NEW – We are now offering support on how to stay socially connected during COVID-19: 1-844-311-7526

Now, here's my conversation with Bruce. 



Q: As a financial advisor, what do you think is the greatest challenge for families seeking to ensure a safe and secure future for their loved one with a disability? 
A: The greatest challenge for a family is the pressure of planning for two generations while also having to think of themselves and their other family members. With so much on their minds, the need to focus on a plan for everyone, INCLUDING a child with disabilities becomes challenging and overwhelming. It is up to the advisor to ensure that once a plan is achieved and annually reviewed, a family can check off the box, take away the personal pressure and then be able to focus entirely on that loved one with a disability. In other words, creating a plan is the greatest stress reliever. 

Q: In our conversation, you described to me how you coach other financial advisors to broach potentially sensitive topics with families. What are some of your key lessons for other professionals when speaking with families about future planning? 
A: The key point I discuss with all advisors is not to be afraid to ask whether the family is supporting someone with a disability for fear the response is "Yes" and you do not have the expertise to advise on matters of future planning for someone who may require a range of ongoing supports. I suggest to advisors that they ask all families, "Is there someone in your family who may not be financially independent throughout his or her life?" Clients will be more open to answering that question versus a more closed question about disability. I suggest that financial advisors ask this question early, as part of the initial fact-finding stage. If the answer is "Yes", there are professionals who can advise on these aspects of future planning. I advise other financial advisors on matters of disability future planning and I am not alone in doing so. 

Q: You do a lot of work with siblings of individuals with disabilities. What are some of the special concerns of siblings in future planning discussions?
A: Siblings are sometimes viewed as the 'lost generation'. In some cases the full responsibility to ensure the care and wellbeing of their brother or sister with a disability is shouldered alone. It is important that siblings have someone to talk to outside of their immediate family, which I stress in my seminars. I feel strongly that siblings should be involved in the planning process and also be assured that their concerns are being addressed when making decisions for life after the death of parents. To the parents, I stress the importance of having early, explicit conversations with their able-bodied children to ensure that plans in place for future care and support roles are understood and  agreed. 

Q: Do you have any advice for families when speaking to a financial planner if the advisor him/herself does not bring up special considerations related to disability? Are there questions families should ask? 
A: Absolutely. Families should ask financial planners if they or any members in their practice have had any experience working with other families that have similar situations. It would be the same question one would an attorney or doctor. I would also ask the planner what actions he or she could take when I (the parent) passes away. What is (or what could be) their role at the time of death and what are their resources? 

Q: We talked a lot about the key role of language in having potentially difficult discussions about an unknowable future for a child with disabilities. How do you help families overcome the fear that they may have in "planning for the worst" when they have high hopes for their child's future? 
A: Most importantly, I try not to 'sugar-coat' the situation, but I do stress the flexibility of arrangements that can be made over time in the child's life during the future planning process. Too many times families get stressed about the word "irrevocable" which results in procrastination in moving the planning process forward. Nothing has to be "irrevocable" if planned properly and in response to evolving circumstances. 

Q: You have been helping families if children with disabilities plan their financial future for twelve years. Is there something you wish all families knew when planning for the future? 
A: No family should feel alone in this process. Apart from experienced professionals, families themselves are a great resource. The key takeaway I would suggest is the importance of having a will. NOT having a will for anyone is bad enough, but it is catastrophic in the case of families raising a child with disabilities. 

Perhaps our Covid "down time" is an opportunity to review future planning arrangements for ourselves and ALL our children - including those with disabilities. 



Thursday, 31 December 2020

My Breakup Letter to 2020



Dear 2020,

I'm breaking up with you. I can't live with you anymore and I'm done trying. In fact I never want to hear from you or see you ever again. 

At first you seemed normal and fine, nice even. I remember last New Year's Eve. Everything felt hopeful and I was relaxed enough to skip the midnight celebration and go to bed early, thinking everything would be just as I planned for the next year. That was back when I imagined that I had some control over my life and the lives of those I love. 

January and February passed as usual for us (I think they did, it's hard to remember now). By March, the skies were darkening and I could tell you were angry. What did I (we) do wrong to make everything into a fight - like you were beginning to obsess about how to punish me/us in every way that would hurt us most. Like a jealous and cruel lover, you began to show your true colours. 2020, you have been an abusive partner. 

First, you brought a plague and if that wasn't bad enough, you separated us from those we love and care for. Typical of your cruel and controlling nature, you kept us separate from our families. That, I can never forgive. But that wasn't enough - then you made us into pariahs - vectors of the plague. You said that we caregivers were too dangerous to allow by the bedside of our parents and even children with disabilities. And that was a lie. But 2020, you have never liked science, have you? You don't care much for facts when truth can be spun into rules that are first made by fear and then unchanged because change is too much trouble. 

2020, if there's one thing good I can say about you, it's that you made me connect more with others like me - caregivers. We came together like never before and we made noise. "Look at us and value what we do!" we shouted, "because our loved ones will become frail without us. Without us, they die from loneliness and sometimes even neglect!" We even got our name changed from 'visitor' to 'essential family partner in care'. By locking us out, 2020, you showed how important we are. I'll give you that. 

The trauma of a toxic relationship takes time to heal. 2020, like all abusive partners, you exposed our weaknesses and then you exploited them. Old cracks and flaws split us open and made us feel helpless. 2021 has promised to be a better partner, but there's a lot of repair work to be done. You know what? I'm up for it and I think others are, too. We can do better, BE better. And by God, we'll do it together instead of apart. I'm betting on a much better relationship with 2021 and I'm staying up tonight to see in the New Year, that's for sure. 





Saturday, 12 December 2020

BEING MERRY IN A COVID CHRISTMAS

 This year is so tiring - everyone I know feels exhausted and .... spent. On the other hand, many of those same people have put a lot of energy into decorating this year. Christmas trees are nearly sold out, outdoor lights adorn most houses (because no one is going away for the holiday season). Everyone is looking for ways to feel the comfort of home and love of family this Christmas, including caregivers. 

So what should caregiving families consider in adapting holidays both to the requirements of Covid and the individual circumstances of families? Dr. Aaron Blight of Caregiving Kinetics, an esteemed colleague in the Caregiver Transformation Retreat that you can read about here, offers wise and compassionate advice in his latest blog post.  

In her recent blog post, Liz O'Donnell, author of Working Daughter comes to the rescue with coping strategies for anyone trying to navigate the holidays as a caregiver for the first time. 

If you are a regular reader of The Caregivers' Living Room, you'll know that I facilitate a free online course called Caregiving Essentials at McMaster University. As it happens on Monday, December 12th, I'm hosting a webinar for participants of the course titled Workable Plans for the Holidays. Here's a sneak peak into some of the ideas I'm going to present: 

1) Know THIS can't happen this year. 


2) Accept Change and Go With Your Creativity


3) Giving is a Powerful Act of Contribution and it Makes Our Loved Ones Happy! So, how to enable giving: 

I made this with my Mom and with Nick in years past for them to give to friends and helpers. All you need is a bag of white chocolate chips (melted in the microwave), some dried cranberries and some shelled pistachios. Mix it, spread it on aluminium foil and refrigerate. Present in a pretty box. Remember to use gloves throughout the process to be Covid-proof. 



I'm also going to talk about thoughtful giving to loved ones this year (scrapbooks or books that you read aloud), or the gift of time spent together listening to favourite music. Many caregivers I know have loved ones who live in a health care residence. 

In my family, here's how we are changing our traditions to spend Christmas "together" this year. Our daughter Natalie and her partner live in another city, so we will skype them throughout the day for present opening and cooking. Our son Nicholas lives in a care home and this year, he is not allowed to come home to us as he usually would on Christmas Day. So, we're going to him for gift opening - we'll skype with the rest of the family from his house and Jim and I will be in masks and face shields. We are very lucky that Jim and I are both allowed to visit Nick at once - many caregivers I know whose parents live in long-term care homes can only visit one at a time, including during the holidays, or in the case of a virus breakout, not at all!

Later, at home, I'll cook while chatting with our Natalie on my laptop. We had a dry run for these arrangements at Thanksgiving and we all agreed it was a good close second to being together. 

Every caregiver's situation will be different this year, but we all have in common our love for family, our creativity and our determination to make things the best they can be this holiday season, 2020. 





Wednesday, 2 December 2020

Our 2020 Intl Day of People With Disabilities Agenda: No More Poverty!

The disability community in Canada has a long history of being fractured. Disability groups have traditionally competed for scarce resources - that's just the way things were. Jockeying for limited funding resources can pit the interests of various disability communities against each other, a situation in which there are no real winners. But something's changing and today, this December 3rd, International Day of People with Disabilities, I have hope for a brighter collective future. Disabled people and the groups that represent their interests have come together in support of a new Canada Disability Benefit, a kind of basic income scheme that would lift disabled Canadians out of poverty in one fell swoop.


The discussion about how to accommodate a good life for our loved ones with care needs doesn't have to be fractious.  Communities that support the wellbeing of people with disabilities as well as our ageing citizenry must locate common agenda items and work together collaboratively to achieve broad, positive change.  The Stanford Social Innovation Review provoked lively discussion in 2011 with an article titled 'Collective Impact'.  In it, the authors propose that non-profits join forces on issues where they agree broad change must occur.  To achieve Collective Impact, organizations must engage in this process:


  1. Collaborating organizations must create a common agenda. (In this case, The Canada Disability Benefit)
  2. These organizations must also share a measurement system that tracks indicators of success.
  3. Stakeholders must work together in mutually reinforcing activities. (See THIS!)
  4. They must also engage in continuous communication. (Like THIS)
  5. There must be a backbone support organization that coordinates, supports, and facilitates the collective process. (For the Canada Disability Benefit, that's the PLAN Institute.)

We must find a way forward in which all are welcome and dependency is not seen as either a weakness or a lack of imagination in problem-solving challenges.  We can do this by searching for consensus and drowning out divisive voices where the agenda does not reflect the greater and common good.  We can do this by insisting that our organizations representing the interests of disabled Canadians engage in Collective Impact. 

Let's DO IT! 

Sunday, 15 November 2020

WHAT THE SOUL NEEDS



Yesterday I was reminded how good it feels to be human. I realized the great effort I have been making to be OK during this pandemic without much touch or community. For the first time since last February, I went out to an art gallery. The National Gallery of Canada in my home town of Ottawa is open with strict Covid precautions. My friend Sylvie who is also my neighbour and I drove separately, meeting at 10am (opening time!) just inside the entrance doors. We were alone. 

Masked and whispering, we wandered through the empty rooms and hallways, eyes laser-focused on the early Canadian art before us. "Don't forget to go into the Rideau Chapel", the guard said. The sounds of a Catholic choir wafted down a hallway on my left. Here, alone but together with a multitude of invisible singers, we remembered what it is like to commune with music, to worship, to feel the solace of company. Turn the sound up. 



Sylvie and I wandered through the rooms of mostly Canadian art history, landing finally in the contemporary section. Here, we found this extraordinary installation by the South African artist, William Kentridge. I felt breathless watching this procession of life, death, redemption and ceremony unfold. These marching figures were at once, me and all of humanity.


Our weary caregiver souls need each other. And we need art to help us understand the meaning of our solitude and our togetherness, in all its messy intimacy. And like my sister Karen, the artist in our family says, this understanding has a lot to do with memory. 

And if I speak of Paradise,
then I’m speaking of my grandmother
who told me to carry it always
on my person, concealed, so
no one else would know but me.
That way they can’t steal it, she’d say.
And if life puts you under pressure,
trace its ridges in your pocket,
smell its piney scent on your handkerchief,
hum its anthem under your breath.
And if your stresses are sustained and daily,
get yourself to an empty room – be it hotel,
hostel or hovel – find a lamp
and empty your paradise onto a desk:
your white sands, green hills and fresh fish.
Shine the lamp on it like the fresh hope
of morning, and keep staring at it till you sleep.

• From A Portable Paradise by Roger Robinson (Peepal Tree, £9.99), shortlisted for the TS Eliot prize.


Sunday, 1 November 2020

National Caregivers Month in a Year Like No Other




This morning I looked at all my posts from early November since I began writing this blog (eleven years ago). At this time annually, to mark the beginning of National Caregivers Month, I would pen something I thought would help caregivers feel seen and valued. This year I think we need to hear a different message.

Ask most caregivers what makes them continue in their role and they'll likely shrug saying, "I don't know... love and necessity, I guess." This year, our love combined with the unpredictable necessities posed by Covid19 have not been enough to keep us going. Many caregivers have been shut out of long term care residences, unable to provide daily essential care to loved ones. Older adults or people with disabilities who need assistance to eat have been casualties of under-resourced facilities where, without families members at the bedside, go hungry. Without someone to feed them, dinner trays remain untouched on the hospital table.

There has been a clarion call to rebrand us from 'visitors' to 'essential family partners in care'. We haven't changed, but the language has. And that's because Covid has revealed to the world what we've known all along: that families constitute the army of laborers who perform the vast majority of personalized human care for people with dependency needs at home, in hospital and in long term care residences. Health care systems simply collapse without us. In health care residential settings, our loved ones suffer and die without us - if not from Covid, then from isolation, dehydration or malnutrition. At home, for a myriad of reasons related to the pandemic, families have largely been abandoned without respite to shoulder the full burden of care.

Caregivers need a new deal with health care systems and with communities. We need to organize for recognition and support. We need to exercise our human RIGHT to care for our loved ones and to be supported in that role wherever we are. This is going to take a multi-pronged approach. 

TRAINING

If we are going to join forces like never before with front line health care workers, we will need training in infectious disease protocols. We will need the SAME training as staff get in hand washing, donning and doffing personal protective equipment and best practices in maintaining sterile surfaces. We will also need health care systems to RECOGNIZE that training. 

COVID TESTING

Many jurisdictions today require Covid testing every two weeks for non-symptomatic designated essential family caregivers whose loved ones reside in long term care. We need a mechanism for accessing that testing in a way that is fast tracked, community based and free for caregivers. 

RIGHTS

We need a rights based approach to recognizing our role that is written into government policy. This serves the purpose of putting a stop to an adhoc response that varies regionally and from home to home, leaving some families locked out while others can support their loved one at bedside without interruption. 

RESEARCH 

It used to be that patients and families were only 'subjects' in research projects. Not anymore. There's a new movement to include those with lived experience of illness, disability or ageing to partner in research and even act as co-authors in papers for academic journals. This matters because suddenly family caregivers are influencing both WHAT is researched and HOW it's researched. 

There's an old adage in research that says it takes 17 years for a discovery made in the lab to hit pharmacies or hospitals. Covid19 and patient/family partners in research won't wait that long. We're seeing the public insist on safe protocols, but also much faster impact for the implementation of evidence-based treatments. I am proud to be a co-designer and co-instructor of a course at McMaster University called Family Engagement in Research. Caregivers have a new role to play as partners influencing health and innovation in both universities and in society. 

ALLIES ON THE GROUND

This National Caregivers Month, I want to salute all those who are working to address these issues and get a better deal for family caregivers in Canada and the USA. The Canadian Foundation for Healthcare Improvement has created a BETTER TOGETHER CHANGE PACKAGE for family caregivers and health care providers. It offers a roadmap to ease tensions between patient and family centred and partnered care, and infection control and safety. I am working with the McMaster University Department of Continuing Education exploring the possibility of creating free video training materials for caregivers in infection control protocols. I'll post more on that initiative as our planning evolves. Stateside, Caring Across Generations  is exemplary in its political action agenda advocating for caring democracy and family caregivers' place in it. The same can be said of the American Association of Retired Persons (AARP). In Ontario where I live, MPP Lisa Gretzky has tabled the More Than A Visitor Act, proposing to enable families of those living in congregate care settings access to their loved ones in group homes across the province. The Ontario Family Caregivers Organization in collaboration with the Change Foundation has developed a scheme to recognize essential family partners in care with a 'Caregiver Badge'

We need all these approaches and more this National Caregivers Month, 2020. We are an army of hard workers who are motivated by love and necessity. Let's mobilize with our allies and fight this virus. Along the way, we'll invent a better deal for family caregivers now and in the future. 


Thursday, 8 October 2020

HOW CAREGIVING CHANGES US: WHAT DIES, WHAT GROWS


You may not accept the title of caregiver. Regardless, you have cared for another, enduring ongoing uncertainty and self-doubt, amid evolving and unwanted relationship changes, and changing networks. It has become a part of you. To deny this aspect of your life is to deny you. You discovered these things about yourself not because you are a caregiver, but because you found parts of yourself in caregiving.

Your pre-caregiver life may now feel oddly unfamiliar, like looking in family albums at a person that resembles you but also feels like a stranger. When you began this journey, you may have convinced yourself that it was only temporary. Care would be enacted while you could, until someone else stepped up. Or when life returned to normal. Here you are, weeks, months, or years later. Though you didn’t want to go on this journey, what you have seen and what you are continuing to experience cannot be denied. The day-to-day realities of being with another in ways you had never experienced or even conceived of is now indelibly part of how you see yourself. It’s part of how you talk about yourself. It’s now part of how others view you. This transformation is an accomplishment—not an accident.

It’s part of how you talk about yourself. It’s now part of how others view you. This transformation is an accomplishment—not an accident.

Along the way, you have had to reconcile why you’ve felt disappointed by those closest to you. You’ve felt isolated and alone, excluded and offended by the beliefs and values others take for granted. You’ve been hurt by others’ (non)reactions to you and your situation. But you’ve also developed your own voice. This kind of authenticity is deceptive because it makes it appear as if it has existed for all times. But it hasn’t. It was earned.

Just as there is no clear “beginning” to the caregiver role, there is no clear “ending” point. It can’t be marked by the end of caregiver responsibilities. That would be like saying parenthood ends when your children go away to college. Or that your love for your spouse or partner immediately stops after their death. There are no clear ending points when love and care and you—your sense of who you are and what you have become—are involved.

There is no going back to the ‘before-caregiving you’ because caring changes us permanently and fundamentally. Our ‘old operating systems’ don’t work for our caregiving lives so slowly, we begin to reinvent and replace them with new ones. 

In caregiving, what has died in you? What has grown? 
If you would like to share your reflections on personal transformation as a result of caring for someone, join our chat at Huddol.com on October 30 from noon-1pm. You will be welcome to ‘unmute’ to share, or type into the chat box or…just listen. All are welcome.

GROUP SESSION

What’s Died in You, What Has Grown?

Friday, October 30th, 12 pm EDT

When you become a caregiver, everything changes – daily actions, beliefs, hopes, expectations and connections to others. In this group session, we will explore what happens to us when we care and turn toward—not away—from our loved ones, and how deep care for another transforms us and our relationships. We will ask, what grows in us, what dies?

This event is hosted by Huddol.com, a support platform for patients and caregivers. I'm a 'Pro' there which means I offer free live learning and sharing events from time to time and offer support to caregivers in the online forums. If you would like to join for this free event, click the register link below. Huddol operates a bit like Apple - you register with a credit card because there are some paid services IF you choose to buy them. But everything I offer there is FREE so there will never be charge to your card unless you choose to order something else. I hope you can join us! 

Register >