What is Independent Living?

The better question is what isn't independent living? It's morphed in a frightening direction from its foundational philosophical tenets of control, choice, advocacy, peer support, and cross-disability to a generic slogan that implies Independence. Assisted Living companies call their products Independent Living even though there's virtually no control, choice, or even the ability to advocate for change. This is true for healthcare, housing, human services, and on and on.

People with disabilities are losing our identity and control in order to qualify for the basic services necessary for community living. Medicaid, the biggest source of healthcare and long term services and supports for people with disabilities has become so ”medicalized” that it forces us into patient roles where clinicians make eligibility decisions and policymakers that are constantly looking to make cuts in programs to save money under the guise of managed-care and continue to roll back services by changing financial eligibility, imposing spending caps, and using algorithms to cut back on service hours.

We are forever in debt literally and figuratively to the government for our existence. We’re constantly fighting just to live outside of a nursing home or an institution. It’s never-ending and rigged to keep us in poverty which, of course, is the solution. If it were easy for us to get jobs we wouldn't be poor and wouldn’t need to rely so heavily on these very programs that are stealing our freedom and human rights. So, what’s the problem? Federal and state government is; from archaic laws and eligibility criteria to misguided policies especially with regard to employment. We have so many disincentives to work that it's just easier and more necessary to stay home and do nothing. In order to have a poverty-level income, we have to take a vow to not work. If you go to work, you lose it all for the most part. It truly is a cycle of poverty that goes from generation to generation.

It comes down to jobs and building wealth. To rise up out of poverty is practically impossible if you have a significant disability. We should be focused on jobs and fight to level the playing field to employment. There's no reason why we have to perpetuate poverty for another generation. It's our time to stop it now! The time to get back to the basic fundamentals of Independent Living is now. As a movement, we have power; we’ve used it time and time again. We came together to force the implementation of 504, we used it to get the ADA passed, we used it to stop segregated housing and employment and we must use it to finally unravel the myriad of policies that keep us from working and receiving long-term services and supports we need to live independently at the same time. Income from working must not continue to disqualify us for long-term services and supports.

I think disability rights advocates know what the problems are, but we haven't been able to come together to solve them. We can’t afford to wait for a better time. There is no better time. Independent Living has to be the unifying force that pulls us together for another exercise of our collective power; to break the back of poverty and finally realize true freedom.

This is what Independent Living is.

The Changing Face of MRC

The Massachusetts Rehabilitation Commission has been the mainstay for employment of people with disabilities for the past 80+ years and community living for people with disabilities for the past 40 years. Combining the two functions in one agency makes sense because you can't work if you're not in a stable living setting. 

Since 1980, MRC funded Centers for Independent Living (CIL's) have developed a network of community living services that support over 30,000 people with all disabilities to live independently in the community statewide outside of nursing homes and other institutions. Services include advocacy, peer support and counseling, benefits counseling, skills training, housing assistance, employment preparation and coordinated long-term services and supports.

MRC has done a good job providing programs and services that meet its Community Living mission, but it appears to be in turmoil with the Vocational Rehabilitation (VR), or employment, side of the agency. Last year MRC had significant audit findings with the federal Rehabilitation Services Administration (RSA) coupled with a loss of federal funding and poor internal controls that resulted in overspending $22 million in the VR program.

In an effort to stop the bleeding, MRC put spending limits in place and initiated a new “Priority of Service” system that is resulting in fewer people with disabilities being determined eligible for paid VR employment services like training in the trades, on-the-job training, books, transportation, and other pathways to competitive integrated employment. Today MRC will only allow $1000 per year per client per year to be spent in these areas and new clients are required to prove that they have the “most significant disability” in order to receive paid services. Additionally, MRC has increased the number of activities of daily living that present barriers to employment from 3 to 4 in order for applicants to meet the highest priority of eligibility; in essence, they’re screening out more people. The process VR counselors are forced to use to determine eligibility is cumbersome, confusing, subjective and makes it even harder to get services that lead to a job.

Counselors routinely require clients to get a healthcare professional to document that activities of daily living are "present" which ignores the clinical training that counselors who are required to have Master’s degrees in VR counseling already possess and adds weeks or months to the eligibility process. As a result, the number of clients moving into paid services with an Individualized Plan for Employment (IPE) has dropped off dramatically.

With these draconian measures one would think MRC is starving for cash, but not so. In an unprecedented move for MRC, in FY 19 the agency received $10.1 million in a supplemental appropriation and in the Governor’s FY 20 budget EOHHS allotted $8.5 million "for lost revenue and to address federal audit findings." In addition, it received $4.5 million in Department of Mental Health (DMH) funding to serve DMH clients with supported employment services while it seeks to abolish its existing Supported Employment Services (SES) division that provides services to people with any type of disability that need job supports. The new DMH funding will provide enough funding to hire at least 15 new VR counselors to exclusively serve their clients. What happened to the hiring freeze imposed by the Baker administration?

And, incredibly, MRC just gave Mass Hire (new name for Career Centers) $450,000 to "train their clients." Career Centers have received hundreds of thousands of dollars over the decades through the federal Disability Employment Initiative grant program and other Department of Labor funding to serve clients with disabilities more appropriately, or at all. Not much has changed in 20 years and people with significant disabilities have not reported positive experiences. In fact, just the opposite. Why would MRC be shelling out close to half a million dollars to be spent by July 1 to a system with a poor track record and an already existing federal requirement to serve people with disabilities? Why is this money going out the door while clients already in paid services have a $1000 per year cap? Where is the logic?

With unemployment of disabled people at a solid 30% in one of the most robust economy’s in the past 30 years we should be demanding more from MRC and for it to get its internal affairs in order and increase employment training, placement and support for the ever-growing number of people with all disabilities living in the community who want to work toward economic self-sufficiency.

Rather than engage the disability community in a dialogue about how to correct their problems that we ultimately bear the consequences of, they hired Deloitte at an exorbitant expense to assist in redesigning their operation. The plan has been complete for months and now MRC is looking to hire another consultant to implement it. Have we been invited to the table for our opinions and recommendations? No, we haven't!

The time to act is now. We need to hold MRC accountable for its actions and demand transparency of its "Redesign" with active outreach, involvement and advice from the disability community now rather than react later. How can we expect to break the cycle of poverty and get a job if the very agency tasked with this is becoming a barrier?

Charlie Carr was the Commissioner of MRC from 2007-2015

The Perils of CommonHealth: a personal story

I've worked my entire life. In the late 1970s a group of us got legislation passed to create a state funded Personal Care Assistance program that enabled people with disabilities to work and earn an income and not be subject to Medicaid rules that held us back for decades by forcing us to live in poverty and not be able to work. Chapter 599 Medicaid as it became known, was the way out of poverty for hundreds of us. One by one we went to work and 599 Medicaid kicked in so that we could still have it pay for PCA and Durable Medical equipment. It truly made the difference for many of us to choose between a life of poverty and a life of opportunity through employment; one where we could, work for a living, save money and, for once, be on a level playing field with those who don't have disabilities.

The program became so popular that Gov. Michael Dukakis included a model of it in his 1988 Omnibus Bill that was the foundation of what was then called the Massachusetts Miracle. The new program was called CommonHealth and it too was a pathway to employment for people with significant disabilities that needed PCA and DME as well as prescription drugs. Once the bill passed, lawmakers decided to combine the existing 599 Medicaid program into the new CommonHealth program with the promise that nothing would change and it would be available to a much broader group of people with disabilities. CommonHealth had practical measures that included a copayment for people who earned more than 300% of the federal poverty level. Certainly fiscally responsible and wasn't met with any resistance.

So, the over 500 people in 599 Medicaid took a leap of faith and switched over to CommonHealth little by little. Again, the deciding factor for all of us was that nothing would change. But, we eventually realized that there was a huge change that none of us anticipated. Bureaucrats at Medicaid never raised a red flag to point out differences between the two programs. People with disabilities were happy just to work and have a program to support us. We did demand that there be no income or asset limitations and that eventually was incorporated into CommonHealth but lurking in the small print were deadly provisions that have now come to completely undermine us.

We learned that CommonHealth was part of a large Medicaid waiver with the federal government. As such, the program is subject to certain Medicaid rules and the biggest enemy is called Estate Recovery. What does that mean? It means that once I turned 55, every penny of CommonHealth money spent on Long Term Services like PCA will be counted against my estate when I die and MassHealth will clawback every penny from my family. It will and has devastated survivors of CommonHealth recipients. It's forced their estates to pay hundreds of thousands of dollars back to the state. When confronted, MassHealth throws up its hands and says that it's a federal requirement. What happened to the mantra that wooed us into the program; nothing will change. There was no provision in 599 Medicaid to take back money from our families that was spent on us when we die. It's an unconscionable practice and we were duped.

As if this isn't bad enough, program guidelines for CommonHealth also require a person to impoverish themselves in order to continue receiving Medicaid funded services like PCA and DME if they can no longer work or reach an age where they want to retire. So you work your whole life, pay your CommonHealth premiums and when you can no longer work you have to "spend down" into poverty where you were when you started and live the rest of your life without the benefits of your labor, judicious savings and, if you're lucky enough, retirement income. Another unconscionable bait and switch that none of us knew about when we were led like lambs to the slaughter from 599 to CommonHealth.

This is a call to action! We will rise up and defend the right to work for all people. We won't tolerate any more disincentives to lifting ourselves up out of poverty and into the mainstream. We won't be silent; in fact, we'll propose legislative changes to these guidelines that will prohibit forcing us into poverty after a lifetime of work and allow us to stop working and/or retire with dignity and with the savings we've earned, assets we've acquired and a quality of life we deserve.