This past August my wife and I, as members of the Down Syndrome Network (DSN), received a series of emails which included an excerpt of a bulletin from AHCCCS (the state Medicaid agency in Arizona) which set off alarm bells. The announcement we received from DSN contained this snippet concerning some new rules:
In the initial notification we sent you from AHCCCS, we informed you that an individual cannot be paid to provide services AND ALSO serve as a member’s individual representative. “Individual representative” is defined as a parent, family member, guardian, advocate, or other person authorized by the individual to serve as a representative in connection with the provision of services and supports.
You cannot be both an individual’s representative and a paid caregiver for that individual. If you want to give up your role as the individual’s representative, you can continue to be paid.”
This message understandably upset many individual representative/caregivers, especially single parents who, like a client of mine, rely on the income they receive for providing services to their disabled child but have no spouse or partner to serve as individual representative. The individual representative is the person who negotiates with DDD each year during the ISP (Individualized Service Plan) negotiations. In the past several years DDD has used these negotiations to cut services (and thus income to the provider) and only those families with a motivated representative willing to negotiate vigorously with DDD were able to keep these cuts to a minimum.
An email went out among parents to lobby against the new rule: “NOW IS THE TIME TO RALLY!!…If we overwhelm AHCCCS with people and media coverage, hopefully someone will take us seriously…”
When our family had its quarterly review with our DDD support coordinator in mid-September we asked about this issue and were told, “I’m not able to make any comment.”
We heard nothing further from DDD until this past week when we received a document which seems to clarify the situation. A new model of delivering services entitled “Agency with Choice” will be offered from Jan. 1, 2013, which offers individuals receiving home based attendant care, personal care, habilitation or homemaker services the opportunity to enter this program and thereby have a role in selecting the service provider and directing his or her duties.
For those who do not choose this self-directed program nothing changes. There are no additional services being offered by the program and for families where the member has limited ability to understand or communicate there is no advantage to be gained from participating in the program, and much to be lost (the parent caregiver could not continue in the role of advocate, as explained above).
What is still left unexplained is why this misunderstanding was allowed to occur. Hopefully no parents actually resigned from their caregiver or advocate functions based on this misinformation.
Many parents of children receiving Medicaid benefits in Arizona find dealing with DDD like wrestling with a Hydra. Like the mythological beast, whenever one problem is resolved two more grow back and take its place.