MaineCare members who direct their own services under Section 19, the Adults with Disabilities Waiver, may be able to get some help staying in their own home as a result of a case brought by Disability Rights Maine (DRM).
MaineCare members who receive Sec. 19 services meet nursing home level of care, but are able to, and choose to, live in their own homes. In order to stay in their homes under Sec. 19, members have help with activities of daily living, such as walking, bathing, eating, etc. They get the help from Personal Attendants (PAs).
According to the rules governing Sec. 19, PAs can only be paid for providing services for not more than 40 hours in a week; services in excess of 40 hours in a week are a non-covered service. The 40 hour cap is a problem because if Sec. 19 members don’t get the services from the PAs, they could end up in a nursing home. For individuals who receive services from an agency, the agency is responsible for hiring and training the PAs. For individuals who direct their own services, the MaineCare member is responsible for hiring and training the PAs. It is well documented that Maine has a shortage of direct care workers.
For members who direct their own care, there are a number of reasons why it can be difficult to find PAs. Alpha One maintains a list of PAs, but this is a limited resource; those on the list may already be working or the list could be out of date. It is often difficult to find someone to only work a few hours in a week, so called “orphan hours”. Some members have particular needs that mean that the PA must have specialized training. Other members live in remote areas of the state where it is difficult to find workers. Workers sometimes quit, leaving the member without staff to fill all the hours until a new worker is hired. Travel can also be a problem, particularly in winter.
A woman who lives in a remote area of the state contacted DRM because she wanted to keep the one PA she has had, on and off since 1998, to continue to provide all 86 hours of services a week that she needs. She had tried to comply with the rule, but was not successful. She contacted Alpha One, but no PA on the list was available. She then advertised on Craigslist and hired two PAs. One stole from her, and the other suddenly quit. She then hired the PA who had been providing all 86 hours of services to continue to provide the 86 hours; otherwise she would have ended up in a nursing home.
DRM began by sending a letter requesting that the state modify its policy because if she didn’t have all 86 hours of services, she would end up in a nursing home. When DHHS did not respond, DRM filed suit.
DRM brought suit alleging that the failure to accommodate her violated her rights under the Americans with Disabilities Act (ADA and Section 504 of the Rehabilitation Act of 1973. In 1998, the U.S. Supreme Court decided that the unnecessary institutionalization of people with disabilities violated the ADA in the Olmstead decision. DRM claimed that DHHS needed to develop an exception to the rule (ETR) process so that this client, and others like her, could seek an exception to the 40 hour rule, so that they would not end up in a nursing facility.
After DRM sued, DHHS quickly agreed to settle the case. DHHS agreed to work with DRM to create new language in Sec. 19 so that members who are at risk of institutionalization can seek an exception to the 40 hour cap. The agreement requires DHHS to develop criteria in making a decision to grant the exception. The criteria will include, but will not be limited to: the availability of caregivers in the member’s area; the number of hours needed above the cap; whether the member’s condition is unique as compared to other Section 19 members; the length of time for which the exception is requested; and the member’s efforts to find other caregivers.
DHHS agreed to make a decision within 30 days of the request, sooner if needed. If the request for an exception is denied, the member may file a fair hearing appeal.
Although not part of the settlement agreement, DHHS asked DRM to work together to develop a process so that members can seek reasonable modifications for other MaineCare programs.