For far too long, men and women across our state with intellectual disabilities, brain injury and autism have waited for services and supports that empower them to live, work, and engage in their communities. Adults with disabilities have much to offer the state of Maine.

They can do so best when they have a role in determining their own goals and choosing their settings and services. Yet the outdated system that exists today forces people into lines for confusing waiver programs in MaineCare. Too many frustrated parents put their children on waitlists for services years before they expect to need them, in hopes that care and help will be available when their children grow into adults.

We heard these and other frustrations last summer, when we participated in listening sessions throughout the state, and in dozens of meetings with self-advocates, families, providers and advocates. We heard a loud cry for access to more choices that can change and adapt to people’s needs as they progress through the natural stages of life. We heard calls for a better planning process that asks people what kind of life they desire, rather than pointing them to a very limited list of services. We heard from people wanting to hold jobs during the day and socialize with friends in the evening. And we heard a need to ensure a consistent quality of services. This is not the system we have today.

The MaineCare program spent nearly $500 million in state and federal funds during state fiscal year 2019 to provide supports to about 5,700 adults with intellectual disabilities and their families. Yet nearly 700 people who are waiting for services have no apparent source of supports other than their families. This is a longstanding problem that can set people back from progress made and create significant stress and hardship for families. It will take time and hard work to reform the system as we know it today.

The Department estimates that clearing the current wait lists would cost at least $80 million in state General Fund dollars. This would lock in a system of care that was initially set up 30 years ago to support people who were leaving Pineland Center. At the time, this network of highly structured group homes was considered necessary to ease the transition of adults who had lived in an institutional setting for most of their lives. But today, all these years later, the largest portion of adults in the system are still being served in group homes, even though the population this system is designed to serve has changed considerably. Today, nearly every adult who enters our system has lived with his or her family and attended public school. Many do not need or want to live in a group home with strangers, where most of their day must follow a group schedule.

Our Community 2.0 initiative, shaped by conversations with stakeholders, challenges us all to reinvigorate our system and take the next big step toward full inclusion of everyone in our communities. We believe the current system serves some people well, but many receive services simply because those services are what’s available, not because they meet the person’s needs.  We must expand the choices for individuals and their families and move toward a system that addresses individual needs using an approach that treats everyone fairly.

Addressing this longstanding problem requires a new vision and strategy, one centered around the goals that each individual has for their life and adapts as those goals evolve. We’re developing that vision. But we also recognize the need to take action now. The Mills administration is pursuing funding to eliminate one of the current waitlists, known as Section 29 under MaineCare, to begin connecting more individuals with services in their communities. More must be done, including better support for families, increasing respite services and providing training throughout the system.

Thirty years later, it’s time for Maine to recommit to better serving our residents with intellectual disabilities, their families and loved ones.


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