The Michelle P. Waiver (MPW) , a home and community based program , a part of the Kentucky Medicaid program, was developed in response to a lawsuit in 2002 to offer an alternative to institutional care for individuals with mental and physical disabilities. Services such as community living support, behavior support, various therapies, and respite care are covered under the MPW.
The ARC of Kentucky, a support group for individuals with disabilities, recently heard of some proposed changes to the MPW. From what the ARC has been told the proposed changes to the Michelle P. Waiver include:
1. Family members will no longer be allowed to be a paid employee through the Consumer Directed Option .
2. Each employee will be required to complete “The College of Direct Support” five hour training before becoming an employee.
3. A new component of the waiver will be “Shared Living” which enables the individual to live in their own home with a NON RELATIVE and will pay a portion of the cost of room and board.
4. Specialized medical equipment can be purchased including ipads.
5. Community transitions will help the person transition to a private residence and will cover the cost of establishing a household.
While many of these changes are for the better, The ARC are opposed to family members being discriminated against. Many members believe that each family should have the right to hire who ever they feel is most capable of caring for their loved one regardless of whether they are related to the individual receiving the services or not.
It has been proposed that the decision to allow family members to be paid to provide services should be on an case to case basis. The changes likely came about to abuse of the system. The waiver was not put into to place to pay parents to take care of their children with special needs, but to provide supports for the family. Supports such as those listed above.
Some parents feel that they are the only ones who are capable of providing such supports, they are afraid of their child being a victim of abuse, or they are concerned that the anxiety of the unknown is not worth it. The following is a quote from a local mother.
“Our daughter is 11, doesn’t walk, talk, is tube fed, suctioned, oxygen at times, you name it I do it. To think about finding someone else to provide her care of frightening. I would just lose the income and we would have to sell our home and move. Do to the cost of our health insurance my husband brings home 650.00 a month. I want to see these people live off this income.”
That said, there are many trained professionals working in the field who are dedicated to the clients and families they serve. Local Lifeskills employee and mother of a child with Aspergers states, “I know that some of you may be afraid of program but I am a mom of a child with Aspergers and have worked in this field since I was 18. My heart is passionate about meeting the needs of families and persons with disabilities. I am always here if someone needs to talk. I manage a provider program with over 75 individuals and 100 contractors that love on folks and their families. I do believe families know best for their child.. but if you find you need some support to walk beside you.. there are people out there that can help empower you.”
Regardless of who provides the services, a key point that the ARC feels needs to be taken into consideration is the cost of institutionalizing an individual with a disability. It is estimated that institutionalizing could cost the taxpayers over $ 400,000 per year .
The ARC will be meeting with Medicaid Commissioner, Mark Hall, as soon as a meeting . Concerned caregivers are welcome to attend the 144 commission on December 15th in Frankfort. Stay up to date on upcoming changes by joining the ARC of KY & the ARC of Barren County Facebook pages.