Please don't try to fix what isn't broken! Consumer-Directed Care with paid Parent and Family Caregivers works, and is the only viable option for many of us, as we don't have the time to take away from our caregiving duties to have yet another "supervisor" to meet with, or the ability to work for a lower wage after an agency takes their cut, when we already work for low wages with no benefits (except 40 hours sick leave, and Difficulty of Care Tax exclusion). Please consider my family's experience as yet another piece of evidence supporting why we need Virginia to keep consumer-directed family care the way it is, for disabled children and adults of all ages.
My husband and I were driven to consumer-directed care after thirteen years of incompetent and inadequate agency care for our daughter who has a rare, complex syndrome that requires 24-hour supervision, and hands-on total body care. Our completely non-verbal, severely intellectually disabled, mobility-impaired daughter also has incredibly complex medical needs, and is completely vulnerable.
Agencies left us without staff for months at a time. We lost several jobs due to having to cover our daughter's care needs at a drop of a hat at any time for an unspecified amount of time because agency caregivers were unreliable about showing up and working, and often quit without notice. Eventually, we could only work from home part-time and take completely flexible intermittent jobs, which are hard to find. This consigned my family to poverty, and a larger burden on the state because of our need for SNAP, SSI, and other poverty programs.
Furthermore, the quality of care provided by agencies is abysmal. The agency caregivers came to us with little education and almost no training. I had to train and supervise agency caregivers one-on-one for my daughter's safety, and to prevent neglect. Training took a minimum of forty direct hours of instruction, and it wasn't safe to leave our daughter alone with agency caregivers until they demonstrated competence with at least 30 days or more of working. Many quit immediately after training, because it's REAL work. Agency administrators were non-responsive to our needs and justified complaints, and not held accountable to provide staff or follow through on their empty promises. If we complained, we were told we could go elsewhere. Where?
We also had jewelry, money and other items stolen multiple times by different employees. Most agency caregivers would sit on the couch, sleep, or be on their phones playing games and socializing, not paying attention to my daughter, feeding themselves in front of her without regard to her need for assistance with eating, make messes and not cleaning up after themselves, and there were instances of minor injuries, falls and unidentified bruises, not to mention the verbal abuse my daughter and our other children endured from inappropriate, ill-mannered caregivers. Some even left the house early before their shifts were done, and there wasn't an adult available to monitor our daughter. In essence I ended up doing double the work-the agency's work in training and supervision and the agency caregiver's work of providing the care, without being paid, plus constantly compromising my own employment security. It was a nightmare on a daily basis for years. If this is what agencies provide for training and oversight, I can guarantee that they will not increase my skills and knowledge as a parent-caregiver. My experience with many different agencies tells me that it is likely they will simply collect their expensive administrative fees for doing zero work. Why should Medicaid/DMAS pay a for-profit company to give me a lower wage, no useful training, and lots of headaches? It will not improve the quality of my daughter's care, it is exploitive and expensive. The solution: continue to allow consumer-directed care and paid parent and family caregivers.
Be aware that 70-90% of individuals with disabilities suffer sexual assault and abuse, often by caregivers. My daughter has not been able to tell us who hurt her, when, where or why. She is at high risk of abuse and exploitation, and we have to ensure that she has the safe and happy life she deserves free from harm. We cannot guarantee that with agency care.
When we were finally able to hire our own staff with consumer-directed care, we still needed to provide supervision and training, but we were able to have a say about who came into our home, and have some quality control. Unfortunately, the two quality employees that we retained for a few years could not afford to stay at a low-wage job forever with no healthcare or benefits. They moved on.
When our daughter turned 18, my husband left his construction management job, took a huge pay cut, and took on the job of being her full-time caregiver. By that time, he was the only person who could lift and transfer her 200 lbs safely on the days when her Parkinson's-like symptoms kicked in and she had no muscle control. We also continued to retain back-up and part-time caregivers outside the family, but they were rarely available and still required supervision. When her siblings came of age, they all became excellent, reliable paid caregivers, and that eased the burden-we knew they would show up, because they lived with us. When COVID hit, I, too, became a caregiver, with my husband as the unpaid back-up caregiver and EOR, as it takes two adults to safely provide care, and he was the only one able to lift our daughter. We still have some outside respite and emergency help, and are always trying to recruit reliable, honest, competent, trainable and safe caregivers, however no one is able to take the job at the improved, but still almost minimum-wage level pay. We have not been able to find anyone new to take the job in seven years. Being parent and family caregivers is the only arrangement that has proved to be a workable solution in 25 years of our daughter's life. Our family members are the best option for reliable, compassionate, safe and competent care, as well as the interaction, respect, privacy and companionship that our daughter needs. She does not need a "mini-institution" in her own home controlled by an agency. Her preferences and needs are met with an excellent standard of care that wouldn't happen anywhere else, with anyone else.
Additionally, as live-in family caregivers, we already have two layers of monitoring, oversight and supervision of our care: two monthly in-person visits from social workers doing case-management provided by the local Community Services Board and our consumer directed service facilitation company. We also communicate with these agencies through emails and calls regularly throughout the month. We actively work as a team together on specific goals to improve our daughter's care, health, socialization, vocational, community integration and recreational services through her Individual Services Plan (ISP). Additionally doctors, specialists and other health providers provide monitoring and oversight because of our frequent visits for healthcare. We do not need another layer of bureaucracy taking our time away from the constant care we need to give our daughter. Also, an extra, unnecessary expenditure for the Commonwealth seems like gross mismanagement of funds, when so many individuals with disabilities who desperately need services are on a many-years-long waiting lists to get a waiver and services. Please fund people, individuals with disabilities, not private for-profit agencies who have little to no accountability to the individuals they are supposed to be serving. I can't help but wonder if private agencies have been lobbying DMAS and the Commonwealth to find yet another source of high profit.
If the Commonwealth and DMAS see a need for training of family caregivers, please use funds to contract services from entities that don't have an eye on their profit margins. Allow parent caregivers to choose the training that they need, fund it, and fund respite care to cover them while they are in training. Certifications, CPR, First Aid, disability-specific training and conferences might be helpful. I left my other much more profitable profession to become a professional caregiver for my daughter, because I knew from experience that no one else could meet her needs adequately and safely. I take pride in my work. My husband and I still have to find other odd-jobs to make ends meet, but I have no regrets because I am making the better choice. Please don't take that choice away from my daughter, me and my family.