Conversations about end of life and disability are few and far between. Even less is spoken about advance care plans or legacy planning for people with a disability. These are indeed delicate conversations for families,friends and service providers to have. Yet without them there is no disability representation within deathcare.
Currently, end of life and disability has yet to be included in deathcare literacy. Our deathcare educators and doulas are not receiving the disability awareness training within their programs. By offering such training, our deathcare communities can become inclusive and most welcoming.
Same holds true for our health and death care systems. Our doctors, nurses, health care professionals, hospice and palliative care professionals are not versed in the care needs of patients with a disability during end of life.
Such realizations are profoundly disheartening.Yet, they offer an opportunity for our deathcare and our disability communities to unite. To join together in not only moving the conversation of disability competent end of life care for people with a disability forward. To also include into the conversation those very systems that lack the education, expertise and awareness about caring for patients with a disability who are in the end stages of their lives.
Carrie Batt has been immersed in the disability community both professionally and personally since childhood.. She became involved in deathcare once she came to learn how her local deathcare communities were mute on the subject of the end of life care and support needs of people with disability. She then enrolled in and completed various trainings in deathcare before compleeting her studies from Beyond Yonder Virtual School for Community Deathcare . Carrie is the founder of SEOL CARE which offers special end of life care for people with a disability.She created a FB group To Walk a Mile in my Shoes,a space for direct support workers,friends, family,for our disability communities to have a space that honours and recognizes loss,disability and empending end of life of people with a disability. Carrie can be reached at firstname.lastname@example.org, twitter at Seol Care,FB Seol Care,To Walk a Mile in my Shoes,905 808 0161