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One of many of my own barriers: In 2024 I struggled to access Vimpat, an ASM that helps reduce focal seizures and then for me generalized seizures that follow. I’ve been on Vimpat for years. However, it’s the only prescription of all that I take that I cannot use generic, it must be brand name. Private health insurance decided they needed lengthy decisions between my neurologist’s decision, the years of proven effectiveness, the lifetime of medications that haven’t helped, and my own experience and decided I didn’t need it and could try something less expensive (I have, and it’s well documented). The outcome was astronomical medical bills from uncontrolled seizures, loss of income, disruption of my life and relationships, my parenting. Of the many seizures, there was the one last month where I smashed my head on my dad’s garage floor, the one where my glasses broke into my face convulsing on a sidewalk. Also the one where my son was at urgent care for an illness and I had one in the middle of the conversation with the doctor (my son said the doctor wasted one rescue medication spray from my purse because he didn’t use it right. That’s another few thousand dollars lost in one spray.) I haven’t been able to drive since December and had to move away from my family home to have Uber and public transit access for medical care. It takes a lot of time to sell a house and move a family so I’m now living away from them because of uncontrolled epilepsy and intersectional factors. What insurance ended up paying out was tens of thousands more in escalated medical care, rescue therapy refills, than if I’d just been kept on Vimpat. Not to mention the socio-economic and financial impacts on my entire life this year. My epilepsy is in my temporal lobe where emotion also lives. That also led to a hospitalization. Thanks to systemic failure of health insurance and US health disparities failed outcomes of health. What if I didn’t have insurance at all? What if people that do don’t want to access any limited fund resources so there’s more funds for those that won’t ever get an insurance approval because they don’t have the privilege of year of paperwork hassle to get immediately necessary medications? After all this, health insurance decided to override and cover Vimpat again. My neurologist and I said this could all happen but our voices and lived experiences didn’t matter. This is one experience in just a span of months. I have a lifetime of them and others with additional intersectionalities have exponentially more. This length post is a simplified version of many more complexities that are interwoven. Please take this survey if you have a disability and want to share:

What barriers have you and yours faced when trying to access healthcare?

Reaching out to those in need, the Institute for Accessibility Development offers #TsinghuaRen chances to conduct research and plans to improve actions and perceptions of the disabled, the elderly, children, and people with temporary mobility impairments. #NationalDisabilityDay

US Government Accountability Office (GAO) survey will collect pertinent #survey information on the barriers faced in attempting to access healthcare from people with disabilities and their caregivers. #GAO is an independent agency that works for US Congress. GAO will put together the information you and others share in this survey in a report to Congress. Both persons with lived disability experience and their caretakers have the opportunity to participate in this important survey of barriers to health care and can lead to important policy changes. #disabilities #disabilityequity #healthcare #healthcareadvocacy #personswithdisabilities #PWD #caregivers #disabilitypolicy Sarah Ailey PhD RN, Linda Long-Bellil PhD JD, Susan Havercamp Phd, Dr. Susan Solman , Suzanne Smeltzer, EdD, RN, ANEF, FAAN, Ken Robey PhD, Catherine M. Beechie, MSN, RN, Cathy Terrill, Kathy Carmody, Ellen Bannister, Rebecca N. Weston PhD RN. In memory of and to advance the work of Andrés Gallegos and Judith Heumann

…and caregivers are being penalized and discriminated against by private insurers, using the “ability” to caregive as “proof” of ability to return to gainful employment. By the government by offering little to no support or relief in benefits that are not tax credits or are income based, which rarely takes into consideration the caregivers possible reduced income due to caregiving responsibilities, caregivers that are receiving disability benefits thru federal , provincial AND/OR PRIVATE disability plans, the person(s) being cared for having increased medical expenses despite their income appearing “above” the baseline, or their living arrangements with many caregivers moving into or having those whom they care for move in with them, putting increased financial strain on already fiscally, emotionally, and physically, strained caregivers and the families/persons they care for.

Empowering change for individuals with disabilities means creating accessible environments, managing medications, and supporting their physical and emotional well-being. 💪 Providing the right mobility aids, nutrition, and encouragement goes a long way in fostering independence and confidence. Let's be there to uplift one another with compassion and care! 💙✨ #gallawah #NDIS #EmpowerChange #disabilitysupportt #disabilityawareness

Me and my brother LIVE this reality. And yet, even I I didn't KNOW these shocking and pervasive statistics. -People with intellectual disabilities face a poverty rate of 75%. -1 in 5 caregivers makes less an $20,000...far below the average household income of $60,000. -Nearly 1/2 report facing financial distress as a result of their caregiving responsibilities. Caregiving often means paying out of pocket to support someone else's life. It often means leaving or reducing employment to provide hands-on care because there's no where else to find it (50,000 people with disabilities in Ontario sitting on waitlists for services, 20 year waitlists for housing). The financial pressure on caregivers is real. Thanks CCCE and all contributing members for the work you do to bring this to the forefront of your important advocacy efforts!!

The disability is not the fault of the person with disability. Therefore the cost of that disability should never be borne by the person with the disability, nor their families. This cost starts at birth and continues to the grave. The Canada Disability Benefit will do NOTHING to pay for the associated cost of the disability, and is only for the "working age". A Canada Disability Benefit on steroids would in fact be a National Disability Insurance Plan. A Caregiver Strategy, an Autism Strategy, a Canada Disability Benefit, A FASD Strategy, Universal Basic Income, etc, etc, etc are all part measures. So many individuals and organizations fighting for a piece of that proverbial pie, still leaving so many vulnerable individuals and families behind. It's long past time that we put all these battles together in one fight for ALL disabilities, families and supporters. For that we need a publicly funded National Disability Insurance Plan for all those with long-term and chronic disabilities. Providing support to persons with disability/disabled people based on need is an investment in people, not charity, that goes much further than legal and Human Rights discussions. It's simply The Right Thing To Do!! Join, lead, or follow us at everycanadiancounts.com

Do you know someone affected by a disability? Many essential needs of people with disabilities go uncovered by insurance or government healthcare programs. Consider the costs: a wheelchair averages $800, a power chair around $50K, a ceiling lift $18K, automatic door opener $3K, ramp $5K, and a vehicle for medical transport $70K. For those with low income, affording these necessities is nearly impossible. Access to healthcare for people with disabilities must improve. How can those on disability benefits afford crucial equipment when insurance and benefits fall short? Policys need to change. #DisabilityAwareness #HealthcareInequality

Breakthrough for better access to palliative care for people with disability The palliative care sector has welcomed news of a new faster NDIS pathway to better meet the needs of people living with disabilities and a terminal diagnosis. Full story ➡️ https://lnkd.in/gwX5sxwW #Palliativecare #Palliativecareqld #MattersOfLifeAndDeath