A dear friend was forced to give up her career in order to provide care for her nonverbal daughter with autism, cerebral palsy, respiratory issues, severe allergies, and seizure disorder.
She struggled mightily to work with agencies to find appropriate caregivers for her daughter, and went through countless people who turned out to be unqualified or incapable or otherwise unsuitable. Many were just unwilling, since they would be paid the same money for sitting by the bedside of a nearly comatose old person as they were for the kind of work required just to keep my friend's daughter stable, clean, and fed. There were times when their actions threatened the health of this incredibly vulnerable young woman, who needed aggressive intervention to prevent pneumonia or other life-threatening health problems.
The only way my friend's daughter survived was due to the efforts her mother made in providing Consumer Directed care. No agency could have or would have done what she did, nor gone through the lengths she went through, to find appropriate caretakers for her daughter, so she could have some rest.
I often spent weekends at my friend's house, helping to look after her daughter while she tried to rest and otherwise deal with her own deteriorating physical condition. It was difficult, because her daughter could not be left alone even for short periods, and could do nothing for herself, nor communicate her needs. The pandemic was a nightmare, turning an already tight market for aides into an impossibility. Much of my time there was spent watching her work the phones, sending and answering emails as she searched for caregivers. Many would not even show up for their appointments with her, having been alerted by their friends in the same agencies to the difficulties of her daughter's care. She lived in an underserved community adjacent to an area hopping with economic activity, and this was a major impediment to finding help.
It took weeks to learn how to provide basic care under the watchful eye of my friend. I had to learn how to recognize the subtle indications of seizures, severe constipation, and respiratory distress from someone who could not tell me what was wrong. No agency employee could have simply walked into the situation and been able to provide competent care from the start. Every person who came in as a caregiver had to go through this process, yet this proposal would make the only person who truly understood her daughter's condition an employee of an agency with no such qualification. It would make the agency the decision maker instead of the family member.
Moreover, it would mean that the few people she found who were qualified and competent would serve at the discretion of the agency rather than of this involved, loving parent, which is ridiculous.
When it came to compensation, even though my friend was able to qualify as a caregiver when her daughter became an adult, she was still strictly limited in the income she could earn from the position. It was not enough to compensate for the real cost of being unable to work on the outside, let alone pay for all of her daily needs.
Even though she was working constantly to give her daughter care, she was struggling to make ends meet and had to watch every dime. Most of the work she put in was not compensated at all, but unlike an agency employee she couldn't simply quit or walk away from the position. Paid or not, her daughter still required the same care, so she ended up providing it for free.
Rather than do the right thing and compensate her for the additional time she spent with her daughter, this proposal would have put her daughter's care in the hands of the same agencies which were so incapable of providing the kind of personnel and coverage she needed.
This proposal would have third party strangers making decisions about her daughter's welfare and needs. No agency knew and loved her daughter as she did. No agency knew with such intimacy the extent of what her daughter required.
This proposal fails to acknowledge that while it is not difficult to find a CNA for someone whose needs are not great, it is nearly impossible to find a good caregiver for people like my friend's daughter, not to mention others whose conditions make them prone to be difficult with or even aggressive toward caregivers. The more severe the disability, the more limited the pool of caregivers. Sometimes the only option is a member of the disabled individual's family.
The potential for abuse and neglect of people like my friend's daughter from non-related paid caregivers is high, especially since the labor market is tight and those with the most potential to be qualified can find other less stressful and more remunerative work in a different field of endeavor.
Do not take away Consumer Directed care. Do not impose requirements that parents who have been providing care for years show they are qualified. It's insulting to them. Allow overtime to family members who are doing this work. Let's stop victimizing the most vulnerable people in our society.