BRUNSWICK — Maine’s system of care for persons with intellectual disabilities or autism is on the brink of collapse.
In 2010, after 35 years, our federal court returned the system to state control. The horrific conditions at the Pineland Center were remedied. We made the courageous decision to close the institution. We enacted laws protecting these vulnerable citizens. The quality of life for thousands of people improved dramatically.
What brought the system so low? The Great Recession. Court supervision ceased. Incremental cuts were made, seemingly tolerable at the time, whose cumulative effect, combined with inflation, now render the system virtually inoperable.
What is to be done?
• First, do not cast political blame. The decisions that put us at risk of catastrophic failure took place under both Democratic and Republican administrations. No one party is to blame. No one governor is culpable.
There is hope. Even in these fractious political times, consensus exists that we must restore our system of care.
• Second, take federal dollars. Every dollar that Maine invests in its Section 21 and Section 29 programs is matched twofold. These two programs are the life blood of funding for our system of care. Yes, there is a federal deficit. But Maine’s crisis is now. We must use the tools available to us. These dollars flow to every corner of the state. They help keep alive Main Street businesses. They generate direct and indirect employment for thousands of people. They reverberate regionally.
• Third, Gov. LePage has proposed the doubling of the cap on Section 29 services. This is eminently sensible. It will enable families to keep their loved one at home, and still be able to survive financially. It will relieve pressure on families to seek the residential Section 21 benefit. It will provide habilitation services to graduating young adults.
• Fourth, wages to direct care workers must rise. Reimbursement rates for providers under Sections 21 and 29 are now subject to a government-imposed price control. When the free market is not allowed to operate, there are always unintended consequences. More than any other single factor, our current crisis is the result of costs not being allowed to fluctuate with the free market.
Providers incur increased expenses such as worker’s comp or health insurance, but cannot pass those costs on. Wages to workers cannot be increased. The workers find less stressful, higher-paying jobs. Providers have no incentive to develop services for people coming off the waitlist. The system is frozen.
Until this problem is addressed, the downward spiral will continue. A bill before the Legislature, L.D. 967, will address this issue. The bill has bipartisan support. It does not eliminate the price control, but it is a fair compromise. It requires a level of compensation commensurate with actual costs. This bill needs to be passed and fully funded.
• Fifth, we have to recognize that direct care work is skilled work. Workers in this system are entrusted, literally, with the lives of the persons they serve. They should be compensated at a level that recognizes them to be the professionals that they are. They deserve to earn a living wage that enables them to achieve a decent quality of life.
• Last, we need to address the waitlist for Section 21 services. It is a shameful waste of resources that we teach students the skills they will need as adults, and then, when they graduate, they wait years for services. Stressed-out family members are forced to cobble together inadequate supports. Worse, the person becomes homeless or is forced to live in a so-called “crisis” home.
The waitlist for Section 21 services is now 1,400 people. Four hundred of those persons have been determined by the Department of Health and Human Services to be “at risk” of abuse, exploitation, or neglect.
It may be impossible to address all of the waitlist issues. But our goal should be to reverse the growth. We need to give hope to those persons who are waitlisted. If we could provide services for 300 people per year, in five or six years we could bring the number to a manageable level.
Maine has a chance, if it acts wisely now, to salvage its system of care for its citizens with intellectual disabilities or autism. Let our democratic process enable these citizens to be part of our communities. If we do that, the lives of all of us will be enriched.
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