My son is a 19 year old with special needs. He needs help with most of his life activities including communication (he is non-verbal), feeding (he has g-tube), walking (he is a risk for falling), personal care (he needs help with wiping, bathing, personal hygine, medicine etc), swallowing (he has hard time managing his saliva, sneezes, managing secritions), safety(he doesn't understand dangerous situation like cars in parking lots, hot surfaces etc), night care (he frequently wakes up at all hours of the night and needs help with bathroom, diapering, changes sheets, etc ), keeping down food (if not properly watched he will throw up few times a day, which is a risk for aspiriation pheumonia). My son is 19 but requires constant care.
Acording to DMAS webiste "The Medicaid waivers are home and community based offering supports and services to a Medicaid individual, both children and adults." This is all we are asking for.
As family members and friends of individuals with special needs we are asking that you leave the decission as to who can be hired to ensure the individual lives at home and coomunity, to the individual with special needs and their representatives. If the individual with special needs would like to hire an outside help let the EOR do so. I know many families who do that. If it is more beneficial for the individual to have a family member take care of them, let the EOR do that. Keep the choices open. Please do NOT RESTRICT which capable individual can take care of special needs person. Do not ban parents from taking care of their minor child if this is the best option for that child.
Currently I'm a full time attendant for my son. If parents of minor children are not allowed by DMAS to be attendants, they will have to look for full time jobs. That would require nursing staff to come to perform the duties that parents do right now, overtime pay as help will be needed over 40h a week, night time care, as we can't work while being woken up every single night. The cost for hiring full time outside care is much higher than having a live-in attendant working.
Again, I know many families who hire outside help and we have done it for years in the past. All we are asking for is for FREEDOM TO CHOOSE THE RIGHT ATTENDANT.
As to abuses: There are 4 organizations that monitor attendants whether they are live-ins or not. Safe gurads like vistis from DMAS representatives and visits from Service Facilitators are already in place. Hours have to be clocked in and checked by fiscal intermidiarey and EORs. Finally, MCOs have multiple yearly visits as well asapprovals and checking the proper needs and hour requierments.
The last 3 years has showed us how the system can be imporved if individuals with special needs are given appropriate choices, please keep the freedom to choose the right attenant going.