What’s One Thing About SMA That People Rarely Discuss But Should?
That the disabled, even in the richest country in the world, are the most marginalized people, without a letter in 'their' alphabet. It's ridiculous that we can not get caregiving help unless we are dirt poor. I'm ashamed or my country in how they ignore the disabled. F em
ATTENDANT CARE. If you have a family member or parent whom is your primary caregiver, they will not be able to care for you indefinitely. You will eventually need to hire caregivers. This is super expensive and no hired caregiver will ever be as reliable or as flexible as family. Are two options currently. A: Be independently wealthy with a minimum of a hundred thousand dollars a year in disposable income to hire attendant care. B. Navigate the bureaucracies of state programs for the disabled most which only fund attendant care if are unmarried in abject poverty with less than $2,000 in COMBINED assets of any type including but not limited to stocks, bonds, property , your possessions, disability income, other income, stamp or coin collections, checking account , bank account , burial plots, gold teeth (yes...it is a question on forms). If you are a penny over at anytime , you will loose attendant care. Also, because in many states the waiting list is so long, to even get on many states programs you must survive at a state run nursing home for the poor and indigent for at least six months...some wait list are as long as ten years ...so apply now.
Name The One Thing You Find Most Challenging About SMA.
Looking Much Younger Than Age?
How Many People Are With SMA LED Here?