Facts and Stats: Families and Mental Health in Canada

At some point, most families find themselves affected by mental illness, whether it’s because a family member (or multiple family members) personally experiences a mental health condition or because they’re providing care to someone else – or both. With appropriate treatment and support, however, most people who experience a mental illness will recover,((Centre for Addiction and Mental Health, Mental Illness and Addictions: Facts and Statistics (n.d.), accessed September 20, 2017. Link: http://bit.ly/2jLyV6Y.))and families often play an important role in providing, arranging or helping pay for care.

Our new fact sheet provides an overview of families and mental health in Canada, including rates of mental health conditions within families, factors that contribute to mental illnesses and the roles family members can play in mental health treatment.

Download Facts and Stats: Families and Mental Health in Canada from the Vanier Institute of the Family.

 


Published on November 15, 2017




Infographic: Students and Family Finances in Canada (November 2017)

Download the Students and Family Finances in Canada (November 2017) infographic.


Post-secondary education is a family investment; regardless of who covers the costs, decisions surrounding higher education can have a significant impact on the lives of young adults and their families. A degree or diploma can open doors to employment and the possibility of higher earnings; however, higher education involves costs that must be managed, and families often play an important role in helping students manage their finances.

Using new survey information and data from Statistics Canada, the Vanier Institute has updated our infographic on students and family finances in Canada.

Highlights include:

  • University tuition fees for undergraduate students in Canada were approximately $6,600 for the 2017–2018 academic year, with an additional $880 in additional compulsory fees.
  • Six in 10 surveyed students reported that parents, family or spouses helped fund their education.
  • Among surveyed parents who are funding their child(ren)’s education, 6 in 10 say that they use day-to-day income to provide this funding.
  • Six in 10 surveyed first-year university students in Canada said they have received a financial award from their university, 71% of whom said they would not have been able to attend university without this financial assistance.
  • One in three surveyed bachelor graduates who graduated with student debt reported that they paid off their student loans within three years after graduating.

 

Download the Students and Family Finances in Canada (November 2017) infographic.

 

This bilingual resource is a perpetual publication, and will be updated periodically as new data emerges (older versions are available upon request). Sign up for our monthly e-newsletter to find out about updates, as well as other news about publications, projects and initiatives from the Vanier Institute. 

 

Learn more about family finances in Canada:

 


Published on November 10, 2017




Changes to Employment Insurance Program Coming in December 2017

The Government of Canada announced today that pending changes to the Employment Insurance (EI) program will come into effect on December 3, 2017, including a new 15-week caregiver benefit; a new benefit that will be accessible to immediate and extended family members of children who are critically ill; steps to simplify the process for acquiring medical certificates for the existing and new family caregiving benefits; and changes to parental leave benefits, such as earlier access to maternity leave for expectant new mothers and the option to choose an 18-month parental benefit (extended from 12).

More details about these changes can be found in the media release from the Government of Canada as well as in content published by the Vanier Institute from our November 1, 2017 webinar on EI Special Benefit changes.

Did you know…

  • EI benefits for new parents make up the largest share (over ⅔) of special benefits under the EI program.((Jennifer Robson, “Parental Benefits in Canada,” IRPP Study No. 63 (March 2017). Link: http://bit.ly/2mCaCt3.))
  • Each year roughly 170,000 biological mothers, 190,000 biological parents (including mothers) and nearly 1,700 adoptive parents claim EI special benefits.((Robson, 2017.))
  • 87% of insured recent mothers across Canada were receiving maternity/parental benefits in 2015 – a rate that has changed little over the past 5 years.((Statistics Canada, “Employment Insurance Coverage Survey,” The Daily (November 16, 2016). Link: http://bit.ly/2oTsTPG))
  • 30% of recent fathers across Canada claimed (or intended to claim) parental benefits, up from only 3% in 2000.((Statistics Canada, 2016.))
    • However, most of this change was the result of the increase in Quebec, where more generous benefits have been accessible since the Quebec Parental Insurance Plan was introduced in 2006:
      • 86% of recent dads in Quebec claimed (or intended to claim) parental benefits in 2015, up from 28% in 2005.
      • 12% of recent dads in the rest of Canada claimed (or intended to claim) parental benefits in 2015, up slightly from 11% in 2005.
  • The number of new EI special claims established increased to 550,800 in 2015–2016 (+5.2% since 2014–2015).((Robson, 2017.))
  • In 2015–2016, EI compassionate care benefits reported the largest year-over-year percentage change from 2014–2015, both in new claims established (+26%) and in total amounts paid (+46%).((Robson, 2017.))

 

Learn more with the following Vanier Institute resources:

 


Published November 9, 2017




Now Available: Content from Webinar on Changes to EI Special Benefits

Content and resources are now available from our November 1, 2017 webinar on upcoming changes to EI Special Benefits in Canada!

The Vanier Institute of the Family hosted a public webinar on pending changes to EI Special Benefits, including the availability of extended parental benefits option, changes to maternity and caregiving benefits, and implications for workplace policies and practices.

Two panellists from Employment and Social Development Canada participated in this event. Andrew Brown (Acting Director General Employment Insurance Policy) and Rutha Astravas (Director of Special Benefits, Employment Insurance Policy) discussed upcoming changes and shared in a dialogue to better understand the consequences for both employers and employees. This timely and important webinar also covered fundamentals of employer-provided top-ups (supplemental EI benefits), administration of the new program and implications for new fathers in the workplace. 

WEBINAR RESOURCES (available in English and French):

 


Webinar Transcript: Changes to Parental, Maternity and Caregiving Benefits

The following is an excerpt from this webinar, which provides an overview of upcoming changes to EI Special Benefits.

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Nora Spinks (NS), Chief Executive Officer, The Vanier Institute of the Family

Thanks, Lauren, and good afternoon, everyone. I’d like to begin by welcoming our subject matter experts, Andrew Brown, Acting Director General; and Rutha Astravas, who’s Director both at the Employment Insurance Policy Directorate and at Employment and Social Development Canada.

Now just before we begin with our experts, I would just like to provide a little bit of context for our comments today.

Families come in all shapes and sizes. Families are dynamic and families are continually adapting. In a recent listening tour that we held across the country, we asked people to define families by answering the question “Family is…” and we got responses from Canadians all across the country: from new Canadians, Indigenous families, immigrant refugee families, families affected by incarceration, families with low income, high income, rural, urban, you name it, and they all answered what family is. The top three answers were: family is love, family is care, and family is support. We’re going to talk today about the care side of what family is.

These days, motherhood is more likely to include not only caring for children but also participation in family finances, generating income, employment in a paid labour force. Millennial dads are redefining parenting every day. In the 50s and 60s, we used to hear dads refer to “my wife is pregnant.” In the 70s and 80s, “my wife is expecting.” By the 90s, we started to hear the phrase “we are expecting.” And recently I was at a session with some young dads and they referred to “we delivered.”

Millennial dads are redefining parenting. They’re more actively involved than ever before. They’re involved from beginning to end. They’re actively involved in labour and delivery as well as care for the newborn. Families are diverse. Families across this country are made up of individuals who love, care and support one another. There is no one-size-fits-all. What does hold them together is this concept of caring, and most care is provided while they’re in the paid labour force.

When we look at the issues before us today, it’s important to understand that when we talk about family, we’re really talking about self-defining family. It’s not just a traditional or a legal definition of family but how families define themselves, and that’s going to be important as we continue our conversation today.

Caregiving is a big part of families, whether it’s caring for a newborn or caring for our seniors and elders and everybody in between. When we look at care and caregiving, we also have to look at work. So when we look at work, the next generation is redefining what work is and what work is important, and redefining work and family.

Now there are three ways that people are defining work and family these days. They’re either separating work and family and work begins and work ends and life happens around it, or integrated, where you might work part-time or flexible hours or flexible locations and you integrate work and life, or you may blend work and life, where work is simply a part of life and all of life happens of which work is simply a part.

Now it is also important when we start talking about the modern workplace, and today’s workplace is as diverse as our families are, and employers all across the country are creating inclusive, supportive work environments. It’s within that context that we’re going to begin our conversation today as we talk about employment insurance and special benefits.

So we’re going to begin our first segment looking at maternity, parental and family caregiving, and when we do, it’s important to recognize that there are several elements related to the conversation. One is the benefits, which we’re going to be focusing on today with our special guest, which is employment insurance, which is the cash benefit that families receive. Often confused with or treated the same as leave, and that’s where you have job protected leave that’s protected under either the Canada Labour Code, if you’re part of a federally regulated industry, or your provincial or territorial employment standards legislation, or if you’re part of a union, a collective agreement.

In addition to benefits and leave, there are also workplace programs, which are optional, which are available in some workplaces, such as top-ups, flexible return from leave, and we’ll be talking a little bit about those today as well. And you can’t talk about benefits, leaves and workplaces without also recognizing and acknowledging community programs and services which exist in neighborhoods, which include child care programs, parent and tote programs, before and after school initiatives, caregiving for seniors or people with mental illness. So community services and programs, although we won’t be getting into in this call, need to be considered as part of the context.

So I’d like to begin by asking Andrew from Employment and Social Development Canada to walk us through our existing employment insurance special benefits and then we’ll go from there to identifying and focusing on what’s new and different. Andrew?

Andrew Brown (AB), Acting Director, General Employment Insurance Policy, Employment and Social Development Canada

Great. Thanks, Nora. And really pleased to join you, the Vanier Institute and all of those on the line for this webinar today. So, as Nora asked, I want to take you through the existing EI special benefits before coming to the changes.

First off, I also want to just let you know that there have been no changes to the rules for qualifying for EI special benefits. The worker still requires 600 hours of work in the previous year to be eligible, and benefits are generally paid at 55 percent of the average weekly earnings up to a cap. So those are elements that are not changing with the program.

Let’s begin with maternity benefit. They provide support for up to 15 weeks for workers who leave work due to pregnancy or for recovery from childbirth. Every year, hundreds of thousands of Canadian families welcome new children into their lives and they need to balance work with care responsibilities during this important time.

Let’s move on to the—next up, parental benefits. So as a complement to maternity benefits, these benefits are available for parents who take time to care for a newborn or a newly adopted child. Parental benefits are available to opposite- and same-sex parents and may be shared. They’re currently available for up to 35 weeks.

Third, sickness benefits. These have been unchanged in the budget and provide up to 15 weeks of support for workers who are injured—who are suffering from an illness or are injured.

Then the compassionate care benefit, this was introduced in 2004 as a 6-week benefit. In 2016, compassionate care benefits were extended to 26 weeks and provide support to family members providing end-of-life care. For the compassionate care benefit, the concept of family is very broad and includes more distant relatives as well as a caregiver who is considered to be like family.

Finally, the family caregiver benefit is to provide care or support to a critically ill or injured child or adult who requires care or support. So what was already existing was the benefits available to parents of critically ill children benefit providing up to 35 weeks of support since 2013, and we’ll be speaking shortly to the new benefit that allows Canadians to provide care to a critically ill adult.

NS: Thank you, Andrew, for that quick overview. So we’ve heard from Budget 2017 that there are a number of new changes to EI special benefits. Can you just walk through some of the principles behind those changes?

AB: Certainly. There are really three principles that are guiding the changes to the EI special benefits, and the first of those is flexibility. We’re providing more choice around the timing when the benefits can be taken to help families balance work and family responsibilities. This is particularly true for the changes to maternity and parental benefits. Parents will have more flexibility in how they take the parental benefit weeks with more weeks available to share. There will also be more flexibility in terms of who can receive EI benefits while providing care to a family member.

The second is accessibility. We’re making it easier to access the EI caregiving benefits by expanding the suite of EI benefits for caregivers to cover a greater range of caregiving situations. We’re also making EI caregiving benefits easier to access by expanding the list of who’s eligible to sign medical certificates to include not only doctors but also nurse practitioners. With these changes, we expect to provide improved access particularly for Canadians in rural and remote areas.

The third of the principles is inclusion. For greater inclusion, we’re expanding the list of eligible family members who can provide care to a critically ill or a gravely ill loved one—as I mentioned, immediate extended family members and those considered to be like family are eligible to provide care under the compassionate care benefit and the same now under the family caregiver benefit. By providing choice in parental benefit duration, we’re also being more inclusive to address the diverse needs of parents. So we’ll get into more specifics on the changes to each of the benefits in a moment.

NS: So just before we do that, Andrew, we can’t talk about EI benefits without mentioning Quebec. Can you let us know how Quebec fits in the new program?

AB: Yes. Important to note that in the Province of Quebec the Quebec Parental Insurance Plan provides maternity and parental benefits to residents, and so the changes to EI maternity and parental benefits do not apply to residents of the Province of Quebec. However, EI caregiving benefits do apply across the country, including in Quebec. So just to reiterate, you’ll notice on our slides that we flagged that maternity parental benefits are applied across the country aside from Quebec.

NS: Okay. So what’s really new here is that even though the EI program excludes Quebec the caregiver benefits will include Quebec.

AB: That’s correct.

NS: Is that another layer of complication on that? Okay. So let’s get into the new maternity benefits specifically that will be available. Now what we haven’t talked about is when these new programs are going to be available. Can you give us a hint about what the timing is for these new benefits?

AB: Okay. The specific coming-into-force date for the new measure has yet to be announced. We’re expecting that there will be an announcement coming shortly, but we do expect that the benefit provisions will be coming into force by the end of the year.

For maternity benefits, as I mentioned, there’s additional flexibility regarding the time period during which benefits may be paid, and it’s now possible to access them sooner. So, previously, they could be accessed as early as 8 weeks prior to the expected date of birth, and they could be taken as late as 17 weeks after the date of birth. The new flexibility is that it will now be possible to access maternity benefits up to 12 weeks prior to the expected date of birth or up to 4 weeks earlier.

NS: So there are no additional weeks, but you can just shift the clock ahead 4 weeks to 12 weeks prior to the expected date of birth.

AB: That’s right. So it is providing some additional flexibility to a birth mother. The trade-off being that if you receive your maternity benefits sooner, they’re not available following the birth.

NS: Right. And now just to be clear, if there’s a complication due to a pregnancy and say you’re on doctor-ordered bed rest for a couple of months prior to birth, can you access your sick benefits if you don’t already have sick benefits from work through the EI program in addition to your maternity benefits?

AB: Yes, you can also access sickness benefits. Sickness benefits may be accessed before or after the maternity benefit.

NS: Okay, great. So let’s look at the new flexibility and choice in parental benefits.

AB: Okay. So the big change for EI parental benefits is that parents will be able to select between two options when they’re applying. In fact, they’ll need to select between either the standard parental benefits option, which is to have those benefits—35 weeks being paid at a 55 percent average weekly benefit—at a benefit rate that’s equal to 55 percent of their average weekly earnings, or to select the extended parental benefits option, which is to receive 61 weeks of benefits paid at a lower rate, 33 percent of their average weekly earnings.

The reduced rate, important to note, only applies to the parental benefit, so it does not have an impact on maternity benefits. Also important to keep in mind that parental benefits can be paid at the same time or at different times. So in other words, regardless of when parent number one chooses to take benefits, another parent could decide to take the benefits at the same time, perhaps most of the time at birth or might choose to take those benefits later on.

NS: So that’s where things like community services come into play. If there is no available infant child care, then you’ll want to take them after one another, but if there is availability of infant child care, then you may want to overlap your parental benefits and be off as a family. Okay. So when we’re talking about the standard benefit, parental benefit, there’s no change. So the big change here is the option to choose 33 percent of earnings for 61 weeks. So when we hear in the media that it’s been extended to 18 months, that’s where that comes from, right? We add 61 weeks, plus the maternity weeks, that gives us roughly 18 months.

AB: That’s right. So the difference from—35 to 61 seem like awkward numbers—but the difference is it’s actually 26 weeks, which is half the year or 6 months. Certainly, there are a variety of considerations that a family would want to take into account when deciding whether to take the standard or extended duration option and this now provides flexibility. We expect there are many families who would continue to take the 12-month option for standard benefits at a higher benefit rate.

NS: Okay. So let’s look at some of the conditions or limitations to the benefits. We have a question in the chat box that if somebody chooses 35 weeks at the beginning and then decides to extend to 61 weeks, can they do so?

AB: Okay. So that is a great question and right on cue. When applying, parents will need to choose either standard parental or extended parental benefits. There’s no default. So we will be asking them to make that selection when they first apply for EI benefits. Once they have received even a dollar of their parental benefits, they’re not able to switch. So they become locked in at that point.

The other thing is that parents need to be on the same option. So two parents need to either both be on the standard parental benefits option or both be on the extended parental benefits option.

Another thing I just want to speak to is transition. So considering that once the new measures come into force, some people will already be receiving parental benefits. If that’s the case, they will continue to receive standard parental benefits, which is what they’re effectively on right now.

NS: But if you’re on maternity leave now and they’re receiving maternity benefits, and they don’t start their parental benefits until after the effective date, then they can choose standard or extended.

AB: That’s right. So access for the extended option will occur once for a birth or an adoption that occurs after coming into force and, provided they have not yet started parental benefits, they have a choice even if they’ve already started maternity benefits.

NS: Okay, great. So parents have a lot to consider when they’re trying to decide between the standard or extended parental options. Obviously there are family implications—certainly careers. Some careers, even a year away from a career may have negative consequences and the 18 months may be impossible. Obviously the math is important, so some families may choose the extended benefits because they’re factoring in the high cost of infant care and the math works out that way. There may not be any child care available so they have no choice but to extend, or they may have a return to work implication based on their employer or the type of work that they’re doing. They may be able to phase back to work. If somebody were to phase back to work and be working say part-time while receiving benefits, what’s the impact on that family?

AB: Okay. So under the EI program, it is possible to combine work with EI benefits. In the case of somebody who is phasing back to work, there is a specific time period during which they may receive EI benefits. And if a parent is earning some income while they’re on parental benefits, then their EI benefits will be reduced essentially $0.50 on the dollar because, from the program perspective, there’s less need for income support if they’re earning income.

NS: Right. Okay. The other considerations that parents have to make are what are their workplace policies and programs, top-up, for example. Is the employer going to supplement the EI benefits? We’ll talk more about that later on in the call, but also what’s available in the community in terms of parenting programs or the like.

So why don’t we walk through a couple of specific scenarios to try to make this a little less complicated. So why don’t we start off with one parent standard benefits, one parent receiving everything.

AB: Okay. Let’s take a look at that scenario then. We’ve got a couple here, Martine and Ibrahim, who are expecting their second child, and they’ve decided that Martine will take all of the maternity parental benefits and she earns $60,000 per year. Now if she chooses the standard option, she’s eligible for up to 35 weeks of parental benefits that would be paid at the 55 percent replacement rate. The maternity benefits would also be paid at the 55 percent replacement rate and she’s receiving $543 per week because she is at the maximum based on her annual income. In total, over a 12-month period, she would be able to receive approximately $27,000.

NS: Okay. So fairly standard. This is what a typical parental maternity benefit has been for the last several years now. So let’s look at another scenario where we’re going to have two parents sharing the parental benefits.

AB: Just before we get to that scenario, Nora, why don’t we take a look at if Martine makes the choice to take extended parental.

NS: Yes. Okay.

AB: So with the other option, they would still see maternity benefits paid at 55 percent for 15 weeks, but if she takes the option for the extended duration of parental benefits, she’d have benefits over 61 weeks, a longer period, but paid at a lower replacement rate: so $326 per week. So that’s the main difference, receiving benefits over a longer period but at a lower rate. The total amount you’ll see is roughly $28,000, very comparable to what she would have received under the other scenario, because essentially the EI benefits are being pro-rated over the longer 18-month duration.

NS: Got it, okay. So now let’s look at scenario where two parents are going to share a standard benefit.

AB: Okay. So this time we’ve got Jessica and Jean expecting their first child and they’ve decided that they’ll share parental benefits, both of them are earning $60,000 per year. They’ve decided that Jessica will take 25 weeks of parental benefits and Jean will take 10 weeks of the total 35. So now we take a look at the math, similar to what we saw in the last example, Jessica would receive 15 weeks maternity, 25 parental for a total of $21,700 in EI maternity and parental benefits over about a 10-month period. Jean would be eligible to receive the 10 weeks in parental benefits for about $5,400 in total. The total amount that they receive being the same as if one person took all of the benefits because they are receiving—they have the same income.

NS: Okay, now let’s say that Jean is actually Gene and Jessica and Gene are in a same-sex relationship and one of them has given birth. There is no change in that.

AB: That’s correct.

NS: If neither one of them gives birth, then neither one of them is eligible for the maternity benefits, but they can continue to split the parental benefits in this example.

AB: That’s also correct.

NS: Okay. So let’s move on to the even more complicated two parents with extended benefits.

AB: Okay. So here what we see now is that with a longer duration, the 61 weeks of parental benefits, this does offer new opportunities in terms of sharing. For example, one parent might want to take a total of 12 months and another parent to take a total of 6 months. Let’s take a look at this scenario here. Jessica has decided to take 45 weeks of parental benefits and Jean will be taking 16 weeks of parental benefits. The total there again is 61. So, to see what they would receive then over that period of up to 18 months is that Jessica could receive here about $23,000 in EI benefits and Jean would receive about $5,000 in parental benefits.

NS: Okay. And like the previous example, if Jean is partnered with Jeff instead of Jessica, then neither one of them, because neither one of them can give birth, neither one can qualify for maternity benefit but they can continue in this scenario with the split any way they choose at 33 percent of earnings for a total of 61 weeks.

AB: That’s right. So now in that example of a same-sex male couple or an adoptive family, there’s access to up to 61 weeks at a lower benefit rate or the standard 35 weeks at the 55 percent benefit rate.

NS: Got it, okay. So why don’t we open the phone lines now. We’ve got lots of questions coming in. Why don’t we first look at the question of alignment with the Canada Labour Code. We are hearing a lot about the changes and how there’s also changes to the Canada Labour Code for those who are federally regulated. Can you just give us a quick overview on what’s happening with the Canada Labour Code?

AB: So I’ll speak to the Canada Labour Code first. So changes are being made to the Canada Labour Code to align with the changes that are being made to EI special benefits. The Canada Labour Code applies to workers in federally regulated enterprises and so it’s a relatively small portion of Canadian workers. It’s about 6 percent to 8 percent of workers across the country.

NS: So banking, transportation, telecommunication, telecom. Okay. And everybody else is either covered under a collective agreement or they are provincially regulated. So what that means is that some province standards state that they will provide job protection in alignment with the federal program of benefits and others will need to be modified or updated in order to align with the benefits program. Correct?

AB: That’s right. So for provinces and territories, they are responsible for their own employment standards. Currently, all of the provinces and territories are aligned to be current EI maternity benefits or at least provide protection that covers the period for EI maternity and parental benefits. With the change, it will be something that provinces and territories need to decide for themselves whether to align or not. In the past, we have seen provinces and territories make changes to align with federal changes. That said, it can take some time. There is one province that so far has announced that it will be making changes, and that’s in Ontario, where they introduced changes to their employment standards legislation to reflect the changes to this new parental benefits option.

NS: Right, and it gets more complicated with collective agreements because some of those won’t be renegotiated until the bargaining session begins and some of them may be included because they already have language that states that they’re going to be in alignment with whatever changes happen at the federal level. So you have to check your agreement and you have to check your labour standards.

 


Learn more about work, family and caregiving in Canada:

 

Published on November 7, 2017




Health Care Experiences of Military Families of Children with Autism

Download this article in PDF format.


Heidi Cramm, Ph.D.

Military families in Canada are highly mobile, relocating three to four times more often than their civilian counterparts.((Heidi Cramm et al., “Making Military Families in Canada A Research Priority,” Journal of Military, Veteran and Family Health 1:2 (November 2015). Link: http://bit.ly/2zx46G1.)) This mobility has been found to complicate access to health care for these families, most of whom live off-base (85%, compared with only 20% in the mid-1990s) and rely on provincial and territorial civilian health care systems. This has an acute impact on the 8.2% of military families who have children with special needs, including those living with Autism Spectrum Disorder (ASD).((Learn more with A Snapshot of Military and Veteran Families in Canada.))

What is autism?

Autism Spectrum Disorder (ASD) is a common neurodevelopmental disorder with an estimated prevalence of 1 in 68 children. While this condition primarily affects social communication, often making it difficult for people living with ASD to share enjoyment or emotional experiences with others, it has a range of symptoms and associated behaviours:

  • Approximately 25% of people living with ASD are non-verbal, unable to use or respond to non-verbal communication (or are otherwise delayed in its use), such as pointing, gesturing and so forth, especially to indicate something of interest.
  • People with ASD often have difficulties understanding abstract language/communication such as metaphors, sarcasm, colloquialisms and jokes.
  • Repetitive behaviours, such as rocking, hand-flapping, finger movements and so forth, are common among people with ASD.
  • People living with ASD are often highly sensitive to change, and they are “creatures of habit.”
  • Most people with ASD have a range of sensory dysfunctions that vary widely (e.g., extreme sensitivities to noise, touch, smells, tastes, etc.) while many also exhibit a high pain threshold.
  • Some children with ASD have exceptional abilities in music, visual and academic skills.
  • In addition, up to 90% of children with ASD will have a co-existing medical and/or psycho-behavioural disorder, such as ADHD, anxiety, sleep disorders, feeding disorders, seizures, intellectual disability and gastro-intestinal disorders.

Early Intervention Supports Treatment for Children with ASD

Research suggests that early intervention is most impactful to the prognosis of ASD,((Geraldine Dawson, “Early Behavioral Intervention, Brain Plasticity, and the Prevention of Autism Spectrum Disorder,” Development and Psychopathology 20:03 (July 7, 2008), DOI: https://doi.org/10.1017/S0954579408000370.)) and it can enhance the development of learning, communication and social skills for people living with the condition. Autism is typically diagnosed in early childhood, even as early as 18 to 24 months of age.

In many provinces, families experience long waiting times when seeking early diagnosis and/or intervention due to a “bottlenecking” of access to appropriate diagnostic centres – delays that can sometimes exceed two years.

Between 21% and 27% of military families do not have a family doctor, compared with 15% among the general population.((Nathan Battams, “A Snapshot of Military and Veteran Families in Canada,” Statistical Snapshots (November 2016).)) Since many health services and treatments are accessed through family doctors, this discrepancy means that military families can have a harder time accessing services for children with special needs, including those with ASD. With each move, families who are moving toward the top of wait-lists for services find themselves back at the bottom.

Since many health services and treatments are accessed through family doctors, this discrepancy means that military families can have a harder time accessing services for children with special needs.

Exploring the Experiences of Military Families of Children with ASD

In a recent qualitative study, military families who have a child with ASD were interviewed to explore and describe their experiences navigating health care systems on behalf of their children.((Most of the families who participated in the study were married, and one-third of them had both parents serving in the Canadian Armed Forces (CAF). Most of the families represented serving members in the Regular Forces, primarily in the Army.))

Many of these families reported that they had a hard time getting their child’s condition noticed, validated and medically diagnosed. Families generally found it difficult to get the assessment for ASD, and this delay in assessment and subsequent diagnosis meant that, for many, their access to intervention services was held up significantly.

One parent explained that their family experienced delays in accessing care for their son after moving because many of the programs available in their new community were for people living with autism who have a diagnosis. Since the family didn’t realize that they would need to have the diagnosis in hand when they sought care in their new neighbourhood, they went ahead and moved without having one, only to find that their son couldn’t access these programs as a result. Access to care for their child was delayed by months.

Difficulties accessing care can have an impact on family finances. Frustrated with wait-lists and the implications of delayed services for their child’s long-term development, many families opted instead to pay directly for private assessment services. One participant described making the decision to seek out private assessment and intervention because the wait-lists would exceed their posting tenure: “We paid privately… because the wait-list was too long. Once we had that diagnosis, [a community organization] put us on a wait-list for [Applied Behaviour Analysis] therapy. That wait-list is two years long. So we were never going to see the end of that wait-list either. So… we started paying privately for him.”

Frustrated with wait-lists and the implications of delayed services for their child’s long-term development, many families opted instead to pay directly for private assessment services.

At times, families waiting for care said they wound up moving again before their child’s name made it to the top of the local wait-list. For some families, service access was within sight, and then another posting forced them to move and start all over again. One participant shared that after waiting for some time for their child to get into a program, they finally received confirmation from their intervention team that the child would be able to start in September – which was of little help to them at that point, since they were going to be moving again in July.

With services varying widely from province to province (along with the corresponding eligibility and funding), some families reported consternation over losing services that they had previously had access to but were simply not available in their new location. One participant described this experience, “We realized the school [in the current province] didn’t offer the same things that they do in [the previous province]… there was nothing they could do…”

These variations also exist from region to region within the same province. For example, another participant described having to remove her child from a highly beneficial education program because they were moving, but then found they were unable to place him in a similar program in the new city because the program didn’t exist there (even though they were in the same province). Families in several other provinces described similar circumstances when moving interprovincially or intraprovincially.

Ongoing Pursuit of Health Care Affects Family Well-Being

While military families are highly resilient, difficulty accessing health care services for their children with ASD can have an impact on their own and their family’s well-being. Participants in the study commonly described frustration and confusion over the daunting tasks of sorting out how to get their children whatever services were possible. One participant described “bursting into tears” after finally getting to the top of a wait-list for intervention only to find the service did not meet expectations.

Some participants described having to draw on support from extended family to help care for their children. One participant said her parents retired and moved to the family’s current posting to assist because “they knew [our son] needed more help and we needed a break.” Others lamented the fact that extended family were too far away to really provide any assistance and were “just not able to be there.” Participants’ experiences with Military Family Resource Centres (MFRCs) were diverse, as the available services varied from base to base.

Parents often experienced strain on their relationships with their spouse or partner as their efforts to find caregiver supports and develop local networks can be complicated by training exercises, deployments and postings. As a result, hard choices are sometimes made related to whether or not a new posting, which comes with career opportunity, is feasible given the health care implications for the child with ASD.

Parents often experienced strain on their relationships with their spouse or partner as their efforts to find caregiver supports and develop local networks can be complicated by training exercises, deployments and postings.

Some participants described the Canadian Armed Forces (CAF) member making career decisions such as changing trades or requesting a specific posting for the benefit of the child, even though it could have an impact on their career trajectory and, by extension, the family as a whole. One participant said their family would consider living apart (i.e., imposed restriction) if it meant the child would receive the services needed, even though this would create a protracted separation that could have a significantly negative impact on the family as a whole.

In some military families, a civilian spouse may need to limit their involvement in the paid labour force to offset the caregiving requirements of the child. Such “trade-offs” are common in military families, with more than half (51%) of surveyed CAF spouses reporting that they have made some career sacrifices because of their partner’s military service, according to a 2009 study from the Director General Military Personnel Research and Analysis (DGMPRA). This limited workforce involvement can further constrain family finances that may be needed to pay for private services for their children. This can have a greater impact on dual-service families (families with two serving CAF members).

Military Families Express Desire for Navigation Support

Some military family members identified a few ways that could be considered to enhance the support for other military families who have children with ASD. Many expressed the desire to connect with other military families who are already at the new location to help map out options for how to access ASD-related services; some wanted this to be a formalized opportunity whereas others felt it would be important that it happen outside of official channels.

Many [families] expressed the desire to connect with other military families who are already at the new location to help map out options for how to access ASD-related services.

Opportunities to provide augmented and current information for families were also discussed, with some expressing a desire for a single point person who can help them navigate across school, community and health services. However, one participant indicated this type of formalized approach could result in parents receiving “filtered information” without any indication of how effective the services really are.

This qualitative study raised some important issues, but there is much left to learn. How might some of these opportunities be realized within existing formal and informal networks for incoming families? How could the disruptions and delays to health care access that military families report be reduced across provinces? What, if any, kinds of options might there be to offset the financial implications for parents when publicly funded services are absent or inaccessible? Are the differences for those who move within provinces similar to those who move across provinces? Exploring these questions through further research – with the insights and participation of families – will be key in supporting Canada’s diverse military families.

 

Dr. Heidi Cramm is the Interim Co-Scientific Director at the Canadian Institute for Military and Veteran Health Research (CIMVHR) and recipient of the 2016 Colonel Russell Mann Military Family Health Research Award.

 

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Published on November 6, 2017