Personal Care Option - Information Bulletin, 4/11/01
What do the following 25 states have in common? AL, AZ, CO, CT, DE, FL, GA, HI, IA, IL, IN, KS, KY, LA, MS, ND, NM, OH, PA, RI, SC, TN, VA, VT, WY.
These States have not chosen to provide any "Personal Care Option" ("PC Option") services under their Medical Assistance State Plans (Medicaid). PC Option services include personal assistant services for ADLs and IADLs.
IF your State chooses, persons with disabilities can receive personal care services either from "Home and Community-Based Waivers" or the Personal Care Option, or from both. This memo will discuss only the PC Option.
The PC Option has been under utilized by our community, but, if it were implemented correctly, can provide the basic package of attendant services and supports for a large number of folks with all types of disabilities.
Because these 25 States have NOT chosen to include the PC Option as a part of their State's plan and because MANY of the remaining 25 States that do provide PC Option services, severely LIMIT PC services, by either number of hours or money caps, we want to explore how persons with disabilities should organize to make their States agree to provide a meaningful PC Option.
What does YOUR STATE do? If your State selects the PC Option, they get to design the program and decide the following:
(a) whether PC Option services are provided only in the home, OR in other locations as well;
(b) whether only a doctor can prescribe these services, OR other licensed persons OR OTHER STATE DESIGNATED ENTITY can, too;
(c) whether PC services are provided by only nonrelatives, OR a parent or spouse is also permitted to provide them;
(d) whether the scope of the services is limited to only PC service, OR includes all ADLs and IDALs, including homemaker and transportation, as well as other services;
(e) whether PC services are limited to children, OR available regardless of age;
(f) amount of hours per day, week, month;
(g) amount of consumer direction allowed in the program.
Your State - not the feds - make these decisions.
MOST IMPORTANTLY, for the States (and DC) that do participate in the PC Option BUT have limitations in services based on either the number of hours per day or the amount of dollars cap, those limitations are SOLELY a State decision. For example, some States limit the PC Option to a few hours a day and some have no limit on the number of hours; some States have cost caps set at 100% of Nursing Facility costs and some have no cost caps. That's YOUR State's decision.
THE BOTTOM LINE - Since the federal Medical Assistance statute is supposed to provide "rehabilitation and other services to help such families and individuals [with disabilities] ... retain capability for independence or self-care," [42 USC Â§1396], you must ORGANIZE TO PRESSURE YOUR State to provide PC Options and to provide them as needed without hourly caps and without cost caps.
One thing we would suggest is to have folks contact people in states that sound like they are getting good use out of the PC Option, such as CA, MO, NY, TX. Ask them how their PC Option is working, and how they advocated to get the PC Option in their State. THEN USE THIS INFORMATION IN YOUR STATE.
Steve Gold, 2001: A Disability Odyssey
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