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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What’s One Thing About SMA That People Rarely Discuss But Should?

A mySMAteam Member asked a question 💭
San Francisco, CA
November 26
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A mySMAteam Member

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.

November 26

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