I am writing as a concerned citizen and parent of a special needs child.
The proposed new regulations for parents to be paid caregivers is completely unrealistic and in no way in the best interest of individuals on disability waivers in Virginia.
Individuals on waivers whether children or adults are in need of major supports to allow them to be functioning individuals in our society. Family members of these individuals struggle to obtain work outside of their home due to the needs of their loved ones. To find care givers at the measly reimbursement pay is beyond challenging and why would they want to perform this difficult job when they can work retail and food services for a higher hourly wage. These individuals are also not allowed to administer medication or perform duties that these individuals need such as treatments, tube feeds etc. What is the purpose of hiring someone that cannot perform the needed items of the individual. If my epileptic son were to have a seizure and I was outside of the home his caregiver would not be able to administer rescue meds to potentially save him from devastating possibilities. Furthermore if these individuals cannot perform these duties family members have to be home to provide necessary care which prohibits them from being able to work outside the home.
In most cases there is no better care giver to special needs individuals than there family members/parents. These special needs individuals also prefer their parents to care for their needs.
The proposed changes want parents to be hired through an agency and be trained to care for their loved ones with special needs. Not only is this insulting that they ask us parents how to care for these individuals, how are they going to train us when we know their needs? They need our help These agencies are already understaffed and struggling. How are they going to be able to intake and train all these new “employees” when the companies cannot even find people to work for them.
The new proposal is putting a cap on the amount of hours that are allowed to be worked. These hours are less weekly than people we are allowed to hire assuming we can find individuals. Our special needs loved ones are allotted a certain number of hours a week based on their skill levels. If someone is found to have 65 hours a week of needed supports how can you say that they only allow a certain amount to be reimbursed? Appendix K flexibility did not have any restrictions.
The cost on families to keep disabled individuals home is significant and keeping them in their own home saves the state a tremendous amount of money opposed to sending them to residential facilities. You are putting families in a situation of having to choose between residential living and keeping their loved ones home due to financial needs of their family since their loved ones need such intimate care.
Allowing parents to remain paid caregivers does not change any budget for the state and their is not any more cost involved. They have already budgeted for these to be billable hours its just it would go to parents instead of a hired individual outside of the family.
I challenge you to think long and hard about what is best for these individuals, whats best for tax payers, whats best for the state, and whats best for the families. In all 4 of these situations allowing parents to remain paid caregivers is in the best interest of all.