In a big win for consumers that could set another model for the nation, advocates in Massachusetts have convinced state officials to significantly improve a plan that will coordinate care for 100,000 people age 18 to 64 with disabilities who are eligible for both Medicaid and Medicare. The Massachusetts plan for people known as “dual eligibles” is the first from the 15 states that received federal planning grants for this purpose. Massachusetts officials previewed revisions to the plan this week, ahead of a second draft expected soon.

Advocates for people with disabilities had pressed the state to give unique attention to long-term services and supports that help people live better and more independent lives. The first draft included a broad range of expanded benefits, including home care, respite care, peer support and home modifications. At a public meeting this week, the state said the second draft will adopt advocates’ suggestions for an independent coordinator of long-term services who will be part of the team that is at the center of coordinating better care for enrollees. As appropriate, that team will include the member, primary care providers, behavioral health specialists, social workers, a primary care coordinator, family members and advocates. The team will create a comprehensive, individualized care plan.

The long-term services and supports coordinator will assess the member’s needs, including those that improve quality of life, and help set up the appropriate package of services. The coordinators will be hired from community-based organizations with experience serving dual eligibles but which are not also service providers. Organizations expected to supply the long-term care coordinators include Independent Living Centers, Aging Services Access Points, Aging and Disability Resource Centers, and Recovery Learning Communities providing peer support to people recovering from mental illness and substance use disorders.

At public hearings, consumers with disabilities packed the room to make poignant pitches for these changes and to share inspiring stories of how robust long-term services, integrally connected with responsive medical and behavioral health care, are helping them live fulfilling lives and contribute robustly to the community.

Also in response to concerns from Disability Advocates Advancing Our Healthcare Rights, the ad hoc consumer coalition, the state is considering an oversight committee to ensure compliance with the Americans with Disabilities Act. Advocates are still pressing for an independent community-based organization to provide that oversight role.

There are still some concerns with the overall proposal, including the plan to automatically enroll everyone eligible unless they explicitly opt out; how much the managed care plan will disrupt existing relationships between patients and providers; the extent of consumer control of care choices; and whether long-term services and supports will be cut if push comes to shove. Fortunately, advocates are continuing to raise their voices and state officials have pledged to continue to meet regularly with all stakeholders, including consumer advocates, to improve the plan. The federal government will also have a say, once the state officially submits its proposal – expected in the next few weeks. From there, it will be a sprint to the finish, since the state hopes to begin enrolling people in the new plan next January. To do that, it must get federal approval, put out bids, select organizations to manage the plan and educate members.

If that isn’t enough pressure, all parties are well aware that Massachusetts is once again being watched by folks across the nation.

— Alice Dembner, project director