Consumer choice is essential for individuals with disabilities so that we can determine who cares for our needs and supports our desires and rights as a person. 

Requiring legally responsible adults to become employs of an agency:

1) strips waiver participants like me of the right to choose participant directed services, and removing this right is based solely on the participants disability and extraordinary care needs that result in the need for a legally responsible adult to provide care

2) places an undo hardship on caregivers who are already caring for their individuals 24 hours a day, 7 days a week.  These caregivers have already been identified as the most qualified individuals to care for the consumer with a disability, already have the training from years of caregiving, and can identify nobody else to provide the care that they are providing on a daily basis.  They are unable to leave their individuals to attend training or testing for certification and likely will not able to meet these requirements solely due to their existing caregiving responsibilities - because the very nature of this service means there is nobody else to provide this care.  

3)  Agencies are already understaffed and cannot meet the needs of existing clients.  They do not have staff to train, certify and supervise an influx of new parent/spouse providers.  There are no increases in the budget to support this increase in staffing demand for agencies.  

I have spent months searching for someone to provide care for me other than my husband, but cannot find anyone. Agencies are seriously understaffed to the point where some don't answer the phone or emails and when they do they say they don't have anyone. When placing personal ads, people respond but when they find out the level of care needed, the pay rate, the requirements to be approved, and the possibility of not getting paid for weeks or months while approval and paperwork is processed they decline to even interview for the position. The level of care for some go even as far as performing bathroom tasks that a lot of disabled people cannot do on their own. To be quite frank, no one wants to clean someone up after they've been to the bathroom in ANY circumstance. Not even family members really wish to do this, but they do because they love them and know no one else can or will. It is quite embarrassing to have to discuss these things with a stranger and some cannot do it. Having my husband be my paid caregiver has been a godsend as I don't have to worry about someone not showing up and being left to fend for myself. I don't have to worry about the possibility of someone stealing from me or being mistreated because YES, those things do happen. I implore you, please do not take this away from us!

Please renew Family and Individual Supports (FIS) and Building Independence (BI) 1915(c) Home and Community-Based Services Waivers to the U.S. Centers for Medicare and Medicaid Services to protect the rights of individuals with disabilities.