We must resist to stay alive

Sometimes I get overwhelmed by the number of attacks being made on poor people in this country. I asked myself, what can I do to make a difference? I can't be fighting every battle in front of me like education, healthcare, reproductive health, civil rights; I'm only one person!

After a lot of thought and advice, I narrowed it down to two. I chose voting and healthcare.

Voting, because the disability community has an opportunity to come together as a bloc and use our strength to gain electoral power. Power that elects candidates for public office. If we get to candidates or incumbents with a pro-disability rights agenda, they'll embrace it if they think that the disability voting bloc will either help to elect them or keep them in office.

Healthcare, because without good healthcare and long-term services and supports, disabled people wouldn’t be able to live a healthy and independent life. Long-term services and supports have been the primary pathway out of institutional settings for disabled people for decades. For me, without attendant services, I'd still be institutionalized.

I've been working on both of these quite a bit lately and there's both good and bad news.

The good news is that, as a community, we're emerging as a political force as was evidenced in the presidential campaign. The backlash from Trump mocking a disabled reporter was fierce and it had an impact. The public overwhelmingly admonished him and media coverage consistently recognized his behavior as unacceptable. Clinton, on the other hand, had strong involvement of disabled people in the earliest stages of her campaign and positions that supported our values and needs. Her campaign had the most active involvement of people with disabilities on all levels than any other in history.

Voter turnout in the disability community was strong and made a difference in the outcome. Hillary Clinton, who had a strong disability policy agenda, was the community's choice but, unfortunately, she wasn't elected even though she won the popular vote. What remains is a grassroots movement of people with disabilities around the country who tirelessly work on getting out the vote and use the ballot box for power.

The bad news is that Trump and the Republican Congress want to gut health care and long-term services and supports by repealing Obamacare and replacing it with legislation that will ration healthcare and cut back on Medicaid funding for long-term services and supports. They want to "rein in" spending in the Medicaid program and use euphemisms like "more flexibility to the states" and "less bureaucratic."

What they’re called is Medicaid Block Grants and Per Capita Caps. The most recent Republican replacement bill for the Affordable Care Act (ACA) eliminates federal matching money for states that offer “expanded” long-term services and supports currently in the ACA, which will eventually destabilize and destroy critical programs. Block grants are cuts and what happens is that poor people are pitted against each other for a shrinking pool of funding. It's cruel and divisive.

So, I'm sounding the alarm. We have to come together to defeat Medicaid block grants to preserve our independence in the community. We have a responsibility to get immediately involved in voicing our strong opposition to the plan and committing the time to grassroots work like letter writing, phone calls, and personal meetings. We have the power to stop this if we exercise it.

Just imagine the reality of cutbacks to long-term services and supports. We must resist to stay alive.

I'm never going back to living in an institution

The chickens have come home to roost. When the Department of Labor issued its Overtime ruling in June 2015 it was widely believed that the viability of Personal Assistance Services nationally was in serious jeopardy. Now, with some 10 months to settle into state Medicaid agencies, we are witnessing a full scale attack on the programs that we’ve fought for and built over the last 40 years.

New York, Texas, California, Illinois and soon Massachusetts PAS programs are on the chopping block for governors and legislatures to "find savings" by capping hours, prior authorizing services and hours, increasing difficulty of program eligibility and other measures that will result in less attendant hours and a more onerous and less responsive state Medicaid program. The carnage has just begun.

The new FLSA rules have required that the Massachusetts Medicaid program pay approximately $1 million more per month for overtime pay. Policymakers argue that this rapid growth in the program is not sustainable. They have a point! The question is what is our response as a community? There certainly is a strong civil rights position thanks to Olmstead. There is also a cost argument when comparing institutional living versus community living.

Bureaucrats and legislators are generally penny wise and pound foolish and just glaze over when you talk about the incredible amount of money that's saved when somebody leaves a nursing facility and uses PAS in the community. When a state is hemorrhaging Medicaid money now, they don't think long-term.

By default, if nothing else, the answer is that it's our civil right to live outside of an institution and it's the states responsibility to pay for the services we use. The rub is, what's reasonable. What do we demand as a reasonable level of service that meets our needs to live a quality life? Whatever the outcome, we need to move quickly to mitigate against the changes that have already been made and stem the flow of future attempts to gut the program.

I've been using state-funded PAS for the past 31 years to live outside of an institution. Prior to the Massachusetts PCA program in 1974, I lived for 7 years in institutions and I'll never go back. I'm going to do anything it takes to fight off unreasonable restrictions that jeopardize my independence and that of over 25,000 other people with disabilities in the state.

Our voices will be heard and we will prevail!