Rett Syndrome typically affects girls; boys with the condition almost always die before birth or in early infancy because they lack a second X chromosome to compensate for the gene mutation.<\/p>\n
Most of those affected by Rett Syndrome do not live past middle age.<\/p>\n
Like others with the syndrome, Selena developed normally in the first few years of her life and then experienced rapid regression.<\/p>\n
After learning to walk, Selena struggled to hold herself up and began falling.<\/p>\n
Aisaican knew something wasn\u2019t right.<\/p>\n
After copious amounts of testing, a genetics team in Vancouver told Aisaican Selena\u2019s symptoms were consistent with Rett syndrome.<\/p>\n
Aisaican had never heard of it.<\/p>\n
At the time, Selena\u2019s doctors didn\u2019t seem to know much about it, either.<\/p>\n
\u201cEven after the diagnosis, I did not believe it. I thought \u2013 it just seemed so doomed,\u201d Aisaican told APTN News<\/a>.<\/p>\n As the syndrome progressed, Aisaican watched her fun-loving daughter lose her independence.<\/p>\n Selena eventually lost the ability to speak, run and play.<\/p>\n By the time she was four, she could no longer swallow solid food.<\/p>\n In just a few short years, the sound of Selena running down the hallway as a toddler was replaced by the grunts of a specialized wheelchair.<\/p>\n Mothers are supposed to protect their children, Aisaican said.<\/p>\n But the disorder\u2019s aggressive grip on her daughter left her feeling powerless.<\/p>\n The future felt grim, especially as there is no known cure for Rett Syndrome.<\/p>\n Aisaican felt like she was watching her little girl develop dementia.<\/p>\n \u201cIt\u2019s the strangest thing \u2013 you\u2019re grieving over someone that\u2019s still here,\u201d she said.<\/p>\n Now in her mid-twenties, Selena is developmentally no older than an 18-month-old, but with far fewer physical capabilities. She cannot talk, walk, eat or go to the bathroom on her own.<\/p>\n Her list of requirements for daily care is extensive: tube feedings, brief changes, seizure management \u2013 not to mention surgeries and the never-ending doctor\u2019s appointments that come with caring for someone with complex medical needs.<\/p>\n Aisaican believes Selena may be the only person in the Yukon living with Rett Syndrome.<\/p>\n Caring for Selena is a full-time job, but one Aisaican is happy to do. She said Selena is a part of her \u2013 her own flesh and blood. It\u2019s her duty to protect her.<\/p>\n \u201cI vowed no matter what, I was going to take care and love her with everything I have,\u201d she said.<\/p>\n Family \u2018backed into a corner\u2019 But being a full-time caregiver isn\u2019t easy.<\/p>\n Like many family members looking after a loved one with complex needs, much of Aisaican\u2019s time is spent juggling the demands of Selena\u2019s care.<\/p>\n She said while caring for her daughter is highly rewarding, it\u2019s also time-consuming, lonely and exhausting.<\/p>\n At 51-years-old, her daughter\u2019s care has become more difficult with time, and since developing rheumatoid arthritis, the physical demands of that care have made it challenging on her body.<\/p>\n Trauma, too, is a part of Aisaican\u2019s life.<\/p>\n Aisaican said she experienced physical and emotional abuse at the hands of her stepfather, a former official with what is now Indigenous Services Canada (ISC), while also grappling with family dysfunction caused by the legacy of residential school.<\/p>\n Those wounds, she said, continue to impact her to this day.<\/p>\n On top of that, finances have been a constant struggle.<\/p>\n Mother and daughter receive around $1,700 combined per month in social assistance from ISC \u2013 around $20,400 per year \u2013 an amount Aisaican said barely covers the basics.<\/p>\n It\u2019s led her to wear many hats to help support her family over the years, including working as a chef, floral designer and esthetician.<\/p>\n Aisaican said she even managed to pay off her student loans while on social assistance.<\/p>\n But she said working has been nearly impossible since Selena graduated high school due to the high level of care she requires.<\/p>\n Beyond that, losing child-specific benefits when Selena turned 18 has also made things harder.<\/p>\n Aisaican remembers how the loss of those benefits hit especially hard the Christmas Selena turned 18, as she was counting on them to help cover presents. Instead, Aisaican taped a piece of paper on the wall and drew a Christmas tree.<\/p>\n It was the only thing she could afford to give that year.<\/p>\n On another occasion, Selena desperately needed dental surgery, but as she had aged out of the system, Aisaican said she was told she\u2019d have to pay out-of-pocket. She said Non-Insured Health Benefits (NIHB) also refused to provide coverage.<\/p>\n \u201cI\u2019m tied up in all of this, and the way we\u2019ve been backed into this corner, it\u2019s not fair,\u201d she said. \u201cThere\u2019s so much unfairness about it.\u201d<\/p>\n Systems depend on caregivers \u2014 but fail to recognize them<\/p>\n Aisaican said while respite care is available, and she has used it in the past, it\u2019s not an option she feels comfortable relying on.<\/p>\n She recalled signing off on a respite worker\u2019s hours, only to learn they were earning as much as $40 an hour while she made $11 working minimum wage.<\/p>\n What stung even more, she said, is that the workers struggled to provide Selena with the appropriate level of care she requires.<\/p>\n \u201cWe\u2019re seeing other people in these positions getting paid and supported and celebrated. That\u2019s just not fair,\u201d she said. \u201cI\u2019m doing this 24\/7. I don\u2019t get breaks.\u201d<\/p>\n Because of those challenges, Aisaican asked disability services if she could get similar funding to help care for Selena and keep her family\u2019s head above water.<\/p>\n She said the department declined, implying that it wasn\u2019t an option due to concerns the funding would be abused.<\/p>\n Other options, she said, are virtually non-existent due to a number of bad experiences where Selena\u2019s safety was compromised.<\/p>\n Earlier in Selena\u2019s life, Aisaican felt pressured by social workers to place Selena in a long-term care facility a few times a month so she could get respite.<\/p>\n Aisaican reluctantly agreed, noting there were several incidents of staff members neglecting to check on Selena for extended periods of time.<\/p>\n During her last stay, Aisaican discovered Selena fast asleep in her wheelchair, covered in vomit, seemingly unnoticed by nursing staff.<\/p>\n She never took Selena back again.<\/p>\n Aisaican also has limited family support.<\/p>\n As Selena\u2019s father is not involved in her life, she leaned heavily on her mother for support \u2013 an option no longer available since her passing.<\/p>\n Today, Aisaican\u2019s only other help is her adult son. While he receives respite care funding and in-home income supports, Aisaican said he\u2019s not able to provide personal care, nor is he expected to, and she wants him to branch out and live a life of his own.<\/p>\n While there\u2019s been occasional suggestions from social workers to institutionalize Selena throughout the years, Aisaican said that\u2019s never been an option.<\/p>\n She believes her daughter deserves to be at home where she is loved and properly cared for.<\/p>\n \u201cThere\u2019s no way I\u2019ll ever let anyone take Selena away from me, but I do live with that fear,\u201d she said. \u201cI live with that fear every day.\u201d<\/p>\n As Aisaican puts it, it feels as though the government is willing to pay anyone but her to provide appropriate care for her daughter \u2013 and her family is falling through the cracks.<\/p>\n She said the experience has left her feeling invisible.<\/p>\n Like her family doesn\u2019t matter.<\/p>\n Aisaican said while systems depend on caregivers, they fail to recognize their value.<\/p>\n \u201cWhy are we still struggling?\u201d she said. \u201cIf they\u2019re not doing it, and I\u2019m doing all the work, then they should be ensuring parents are getting paid.\u201d<\/p>\n In Aisaican\u2019s eyes, it\u2019s an oppressive system that disadvantages vulnerable families like hers with little meaningful support.<\/p>\n That\u2019s why she\u2019s speaking out and advocating for paid compensation for family caregivers.<\/p>\n \u201cThey say that you can tell a good community by how they care for their most vulnerable. I want to see that come to fruition,\u201d Aisaican said.<\/p>\n \u201cThis is worthwhile work that deserves to be compensated.\u201d<\/p>\n Advocates criticize lack of national approach to caregiving<\/p>\n But in the Yukon, there is no mechanism for family members of adults with disabilities to be paid for their care.<\/p>\n Thibaut Rondel, a spokesperson with the Department of Health and Social Services, said in an emailed statement that Individualized Supervisory Care, a program that offers a range of supports to children under 18, and, in some limited cases, compensates parents who lose wages to care for them \u2013 is largely unavailable to families caring for adults.<\/p>\n Instead, supports for those over the age of 18 are usually limited to respite funding and participation in day homes.<\/p>\n \u201cWhile the children\u2019s side of Disability Services has a broader range of supports than the adult side of the program, the Government of Yukon continues to review its policies to ensure they are equitable and responsive to the needs of individuals with disabilities and their families,\u201d\u00a0Rondel\u00a0said.<\/p>\n Advocates say the Yukon isn\u2019t alone.<\/p>\n James Janeiro, director of policy and government relations at the Canadian Centre for Caregiving Excellence (CCCE), a program of the Azrieli Foundation that advocates for Canadian caregivers, said those providing care are shouldering enormous pressure.<\/p>\n \u201cThe situation out there is not great for caregivers right now,\u201d he said.<\/p>\n While a handful of provinces, including Nova Scotia<\/a>, Prince Edward Island<\/a>\u00a0and Newfoundland<\/a>,\u00a0offer paid caregiving programs, compensation differs depending on jurisdiction, and for most Canadians, the financial burden of caregiving typically falls on caregivers themselves.<\/p>\n Janeiro said statistics show 22 per cent of caregivers spend $1,000 per month on out-of-pocket, caregiving-related expenses.<\/p>\n \u201cThat\u2019s a lot of money, particularly as we are now in the midst of a cost-of-living crisis and potentially even on the verge of a recession,\u201d he said.<\/p>\n Despite the many challenges an estimated 7.8 million Canadian caregivers<\/a>\u00a0like\u00a0Aisaican face, Canada still has no national approach to caregiving \u2013 much less a paid caregiving program.<\/p>\n Earlier this year, CCCE released its national caregiving strategy<\/a>, which calls on the federal government to take stronger action to address the growing plight that caregivers face.<\/p>\n The strategy outlines several solutions to improve Canada\u2019s caregiving systems, reduce financial and workplace stress and better recognize caregivers and the support they provide.<\/p>\n \u201cWe have a road map to make Canada the best place in the world to give and receive care,\u201d Janeiro said, adding that similar supports exist in places like the United Kingdom and Australia.<\/p>\n In the U.K., caregivers can receive around \u00a380\u2013\u00a385 a week \u2013 about $145 CAD. In Australia, carers of children and adults can earn $153 AUD bi-weekly (around $135 CAD), and low-income carers can also qualify for an additional carer payment.<\/p>\n \u201cThis is an idea that\u2019s got traction both at home and abroad and has been shown to dramatically reduce the stress of caregivers and improve the outcomes, both for caregivers and the recipients of care for whom they provide care,\u201d he said.<\/p>\n According to Janeiro, it\u2019s an issue Canadians can no longer afford to ignore.<\/p>\n CCCE\u2019s data shows one in four Canadians are currently caregivers and\u00a0half will be caregivers at some point in their lives.<\/p>\n \u201cOne quarter of the population is very hard to ignore. Half the population is impossible to ignore when it comes to public policy priorities and getting things done,\u201d he said. \u201cCanadians and our systems are not ready to meet this moment and support caregivers and the important work that they do.\u201d<\/p>\n Heather Aldersey, a professor with Queen\u2019s University School of Rehabilitation Therapy and Canada Research Chair in Disability-Inclusive Development, agrees.<\/p>\n She said evidence overwhelmingly shows caregivers need more support and recognition.<\/p>\n \u201cI\u2019ve heard from caregivers that they need to reduce their working hours or even leave paid employment completely to be able to meet the needs of their loved one with a disability,\u201d she said. \u201cI think that\u2019s definitely something that needs to be valued and honoured and recognized in our society in a way that maybe it isn\u2019t the way it should be right now.\u201d<\/p>\n Aldersey said one of the biggest challenges caregivers of adults face \u2013 as seen in Aisaican\u2019s experience \u2013\u00a0 is the \u201cabrupt\u201d transition from school-based services to adult supports.<\/p>\n She said research suggests those requiring care benefit most from a mix of formal supports delivered by paid providers and informal help from families and friends.<\/p>\n She said informal supports, which are done out of love rather than obligation, are especially significant for a care recipient\u2019s well-being.<\/p>\n \u201cWe identified that family or friend caregivers often support a person they care for with a sense of love and commitment to a depth that is rare in formal support relationships,\u201d she said.<\/p>\n Indigenous caregivers face increased pressure<\/p>\n Aldersey\u2019s research echoes other findings identified in CCCE\u2019s national strategy, which paint a bleak picture of the current state of caregiving in Canada.<\/p>\n It found that half of caregivers experienced financial hardship and nearly half reported mental health challenges related to their caregiving responsibilities.<\/p>\n Female caregivers in particular are more likely to experience stress, poor mental health and financial strain due to gendered expectations that devalue their labour.<\/p>\n It also found that replacing unpaid caregivers would cost the federal government roughly $97.1 billion annually.<\/p>\n \u201cWithout caregivers, Canada\u2019s health and social systems would collapse,\u201d it states, pointing out that while the demand for care is growing as people are living longer with more complex needs, there are fewer caregivers available.<\/p>\n \u201cCanada\u2019s strained healthcare system and the sustainability of the care economy are at a breaking point,\u201d it further warns.<\/p>\n Indigenous caregivers face even greater hardship.<\/p>\n According to the strategy, Indigenous caregivers are more likely to experience poverty than non-Indigenous caregivers.<\/p>\n Janeiro said CCCE\u2019s data is showing \u201cwarning signs\u201d that can\u2019t be ignored.<\/p>\n \u201cAbout 59 per cent of Indigenous caregivers in particular told us that financial support is the number one thing that they would need in order to be able to keep supporting the loved ones around them,\u201d he said.<\/p>\n The strategy notes Indigenous caregivers also face greater challenges as they navigate complex cultural, historical and systemic factors from ongoing impacts of colonization and intergenerational trauma.<\/p>\n Their well-being, too, can be impacted by strong cultural expectations to provide care for family and friends, it notes.<\/p>\n It states Indigenous caregivers often experience discrimination in the healthcare system due to assumed stigma and biases, and that three in four caregivers want supports to be delivered in a culturally sensitive manner.<\/p>\n \u201cThis means Indigenous care recipients and caregivers often lack access to culturally safe healthcare: care that does not profile or discriminate against them and respects their culture and traditional healing practices,\u201d it said.<\/p>\n Aisaican has felt those hardships first-hand.<\/p>\n She recalled how strangers in a hospital cafeteria lineup assumed Selena had Fetal Alcohol Syndrome Disorder (FASD) and began loudly accusing her of abusing alcohol while pregnant.<\/p>\n It took all of Aisaican\u2019s willpower not to snap back.<\/p>\n \u201cDiscrimination is so painful,\u201d she said.<\/p>\n The barriers Indigenous people face can also be institutional.<\/p>\n During a meeting to submit a Jordan\u2019s Principle application for Selena, Aisaican said a non-Indigenous employee repeatedly ignored her while making gestures to someone across the hall and discouraged her from submitting the application, suggesting it likely wouldn\u2019t be accepted.<\/p>\n Shocked by the employee\u2019s dismissive conduct, Aisaican left the meeting in tears.<\/p>\n She later submitted the application on her own and got it approved.<\/p>\n \u201cIt makes you feel like you don\u2019t belong,\u201d she said.<\/p>\n New collective aims to uplift Indigenous caregivers<\/p>\n Experiences like Aisaican\u2019s are what drive Dr. Grant Bruno\u2019s work to transform the landscape for Indigenous caregivers in Canada.<\/p>\n A member of the Samson Cree Nation and an assistant professor in the Department of Pediatrics at the University of Alberta in Edmonton, Bruno is the father of five children, two of whom are autistic.<\/p>\n He\u2019s now spearheading the Indigenous Caregiving Collective (ICC), a three-year initiative with the CCCE that aims to support and connect Indigenous caregivers of neurodivergent children, starting with the four Nations of Maskwac\u00ees.<\/p>\n While the program is tailored for caregivers of children, its broader vision includes supporting caregivers and care recipients of all ages.<\/p>\n \u201cI recognize all the challenges that many of our families face, whether it\u2019s jurisdiction, it could be isolation, it can be feeling overwhelmed, it could be not being able to get the right supports and services for your families,\u201d Bruno said.<\/p>\n Launched earlier this year, the project is still in its infancy. The plan is to eventually establish a national network of Indigenous caregivers, Elders, health practitioners and more to share knowledge and advocate for better caregiving policies.<\/p>\n Bruno believes it\u2019s the first project of its kind in Canada.<\/p>\n \u201cI\u2019m really hoping that it grows and that we find more support,\u201d he said.<\/p>\n That support, he said, is needed now more than ever as Indigenous caregivers are in crisis mode.<\/p>\n Bruno said Indigenous families he\u2019s encountered are often unable to access supports due to bureaucratic challenges linked to living on-reserve.<\/p>\n He said in some extreme cases, families have voluntarily given their children up as they don\u2019t have adequate support or financial assistance to properly care for them. Those children, he said, can potentially be sent to non-Indigenous families who receive compensation for their care.<\/p>\n \u201cThey\u2019re not putting the same amount of resources into our communities where the families should be,\u201d he said.<\/p>\n He also noted Indigenous caregivers are struggling to navigate colonial systems that don\u2019t recognize how their role is deeply rooted in culture, ceremony and kinship networks.<\/p>\n It\u2019s an issue the ICC is hoping to change.<\/p>\n \u201cI think it\u2019s really important to recognize the strength that many, many caregivers carry,\u201d he said. \u201cThose strengths need to be celebrated as well because it\u2019s not easy.\u201d<\/p>\n Federal supports \u2018just a token\u2019<\/p>\n The federal government says it\u2019s aware of the strain caregivers are facing.<\/p>\n Saskia Rodenburg, a spokesperson with Employment and Social Development Canada, said in a written statement that provinces and territories have ultimate jurisdiction over healthcare, and that the federal government is continuing to work with them \u201cwhile respecting their jurisdiction.\u201d<\/p>\n When asked if the federal government would ever consider implementing a paid caregiving program, she said the department couldn\u2019t speculate on future policy decisions.<\/p>\n Another spokesperson with the department, Maja Stefanovska, said caregiving is a \u201cpressing issue.\u201d<\/p>\n She pointed to various federal supports that are designed to support family caregivers of adults with disabilities, including the Canada caregiver credit<\/a>\u00a0(CCC), EI caregiving benefits<\/a>\u00a0and the Disability Tax credit<\/a>\u00a0(DTC).<\/p>\n She noted the DTC can open doors to other programs like the Canada Disability Benefit<\/a>\u00a0and the Registered Disability Savings Plan<\/a>\u00a0(RDSP).<\/p>\n However, she acknowledged that none of the existing federal supports are intended to provide compensation to family caregivers.<\/p>\n Aisaican\u00a0said while federal supports may look good on paper, they don\u2019t offer any tangible benefits to ease the immediate pressure of caregiving at the level and quality she believes she provides.<\/p>\n She said she\u2019s never been able to take advantage of non-refundable credits such as the CCC or DTC as she\u2019s never owed income tax.<\/p>\n She also called the RDSP into question, noting that the funds can\u2019t be accessed until the beneficiary turns 60, and that care recipients like Selena with life-threatening conditions may never live long enough to tap into the program.<\/p>\n \u201cFor me, it\u2019s just a token,\u201d she said.<\/p>\n Janeiro isn\u2019t surprised.<\/p>\n He said federal supports aren\u2019t effectively meeting the needs of caregivers who require them most, and despite two federal commitments to make the CCC refundable, that has yet to happen.<\/p>\n \u201cIt doesn\u2019t work very well,\u201d he said, noting only nine per cent of caregivers can actually access the credit. \u201cThis is something that caregivers desperately need.\u201d<\/p>\n CCCE\u2019s national strategy calls on the government to change the credit to refundable, something it argues would help 94,000 low-income caregivers.<\/p>\n \u201cIn 2021, 552,000 Canadians were entitled to receive the CCC. Currently, that entitlement only benefits people with taxes owing \u2014approximately 17% of Canadians who file. The CCC should reach all caregivers,\u201d it states.<\/p>\n The national strategy likewise advocates for a caregiver allowance for \u201chigh-intensity\u201d caregivers who provide more than 35 hours a week of care.<\/p>\n \u201cWhile some financial supports exist for caregivers, they do not provide nearly enough support for caregivers with high-intensity caregiving responsibilities\u2014and the low incomes that often come with those responsibilities,\u201d the strategy states. \u201cMany caregivers providing over 35 hours a week of care are likely doing it at the expense of staying in paid employment with full-time jobs.\u201d<\/p>\n Janeiro said CCCE is also recommending a $600 monthly allowance to begin with, a figure he noted is comparable to programs in the U.K. and Australia.<\/p>\n \u201cWe recognize that this is the beginning of a conversation, right?\u201d he said. \u201cSo, $600 is a number that we felt was more doable, more practical to achieve in the shorter, medium term, and once it\u2019s there, we can grow it.\u201d<\/p>\n Yukon MP Brendan Hanley, who has met with Aisaican, said he supports CCCE\u2019s push for a national paid caregiver program and agrees more federal action is needed.<\/p>\n \u201cI think she makes a very compelling case for that,\u201d he said. \u201cI think what this points to is that we really do not have adequate financial resources for caregivers.\u201d<\/p>\n Hanley said he\u2019s heard from caregivers and other groups that the disability tax credit form is not user-friendly and can be difficult to fill out, and that additional supports outside tax credits could further benefit families \u2013 whatever that may look like.<\/p>\n \u201cWhether or not it\u2019s paid caregivers, we certainly need to address the inadequacy of financial support for caregivers in general,\u201d he said.<\/p>\n Hanley noted that implementing CCCE\u2019s strategy was a budget commitment made last year, which included forming a sectoral table on national caregiving.<\/p>\n \u201cThere\u2019s a lot of language, both in the budget and in some of the federal actions about the caregiver economy, recognizing that this is a hugely under-recognized and underpaid economy,\u201d he said. \u201cWhatever recommendations come out of the sectoral table, (we need to ensure that\u2019s) put into action.\u201d<\/p>\n Caregivers wait for more action<\/p>\n Despite the many challenges in Aisaican\u2019s path, she still has hope.<\/p>\n Last year she saved enough money to travel to Victoria, British Columbia, where she attended the Indigenous Disability Wellness Gathering.<\/p>\n Aisaican said the event was a reminder she\u2019s not alone.<\/p>\n \u201cThat trip was just so meaningful,\u201d she said. \u201cIt was a gold mine of connections and support and resources and things I never even knew existed.\u201d<\/p>\n She said recent meetings with Hanley and the territorial government have been encouraging, and she also sees disability services\u2019 commitment to review the Individualised Supervisory Care program as positive step.<\/p>\n The ICC likewise gives her encouragement.<\/p>\n \u201c(That\u2019s something) I\u2019ve been looking for because we\u2019re so isolated,\u201d she said. \u201cI\u2019m always looking for connections.\u201d<\/p>\n As it stands now, only time will tell how the federal government chooses to respond to the incredible challenges caregivers like Aisaican face, and if that response will, in fact, result in the change needed to reshape Canada\u2019s caregiving landscape for the better.<\/p>\n Aisaican is hopeful that there will one day be a future where caregivers are better recognised, appreciated, and respected.<\/p>\n Until then, she plans to keep fighting, not only for herself, but also for her daughter.<\/p>\n \u201cI\u2019m her everything, and I would do it forever,\u201d she said.<\/p>\n \u201cI would choose that every single day.\u201d<\/p>\n \n Report an Error \t\tContinue Reading<\/p>\n","protected":false},"excerpt":{"rendered":"Georgette Aisaican\u2019s daughter is her whole world. Aisaican, a member of the Cowessess First Nation who\u2019s called Whitehorse…\n","protected":false},"author":2,"featured_media":358452,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[49,48,154623,13686,8157,894,84,392,154624,154625,154626,154627,913],"class_list":["post-358451","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-ca","tag-canada","tag-canadian-centre-of-caregiving-excellence","tag-caregiving","tag-disability","tag-federal-government","tag-health","tag-healthcare","tag-indigenous-caregiving-collective","tag-paid-caregiving","tag-territorial-government","tag-whitehorse","tag-yukon"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/358451","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=358451"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/358451\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/358452"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=358451"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=358451"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=358451"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}![\"caregiver\"](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2025\/12\/PAID-CAREGIVING.jpg\")
Whitehorse mother Georgette Aisaican with daughter Selena. Selena has Rett Syndrome, a genetic neurological and developmental disorder that affects the way the brain develops. Photo: Jordan Haslbeck\/APTN News\n<\/p>\n![\"caregiver\"](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2025\/12\/Georgette-and-Selena-Aisaican-caregivers-Yukon-2.jpg\")
<\/a>\u2018I\u2019ll never let anyone take Selena away from me,\u201d says Aisaican. Photo: Jordan Haslbeck\/APTN.<\/p>\n![\"caregiver\"](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2025\/12\/Georgette-and-Selena-Aisaican-caregivers-Yukon-1.jpg\")
<\/a>\u2018Discrimination is so painful\u2019 says Aisaican. Photo: Jordan Haslbeck\/APTN.<\/p>\n![\"caregiver\"](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2025\/12\/PAID-CAREGIVING-4.jpg\")
<\/a>\u2018I think what this points to is that we really do not have adequate financial resources for caregivers,\u2019 says Liberal MP Brendan Hanley. Photo: Jordan Haslbeck\/APTN.<\/p>\n
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