Don't sit this one out

As people with disabilities we have an opportunity change the outcome of the upcoming presidential election. Regardless of your party affiliation or candidate of choice, the fact is that collectively, we have strength as a voting bloc. There are approximately 33.7 million Americans with disabilities of voting age and are about 20 percentage points less likely than those without disabilities to vote, and 10 points less likely to be registered to vote.

Quite a bit of this is due to inaccessibility in polling places. Of those voting in the past 10 years about 8% of people with disabilities encountered such problems compared to less than 2% of people without disabilities. But also, much like the general public, there is significant apathy and a disconnect with the political process and those running for office.

That said, we can't sit this one out! At stake are issues like healthcare, education, climate change, the economy and employment, reproductive rights and on and on. Each of these issues resonates with our community and each is under attack.

Further, perhaps most important, is that the next president will most likely make key appointments to the Supreme Court. Three of the court’s nine justices will be in their 80s and one or two have hinted that they plan to step down soon. The Democrats have the most to lose because if a Republican assumes office, they will have a much easier time moving nominations through the Senate which is controlled by Republicans. President Obama, on the other hand, will face a bruising brawl with whomever he nominates to replace Justice Scalia.

Future justices could potentially face cases on everything from campaign-finance, affirmative-action, abortion and voting rights. In an age of Intersectionality, especially from youth with disabilities, these are our issues too. Issues of social justice that affect everyone.

The upcoming presidential election in November may result in one of the most important presidencies in recent history. Throughout the country there is a growing number of organizations that are aggressively involved in voting registration for people with disabilities such as Texas ADAPT and Massachusetts REV UP because of the importance of our vote and our collective power as a voting bloc to make sure that our issues get addressed.

If you are not registered to vote, register immediately and all of us owe it to ourselves and all those who came before us in the struggle for disability rights to exercise our power. It has come at a tremendous cost.

Merry Christmas

I'm Christian and celebrate Christmas. As I grow older the deeper meaning of the holiday becomes increasingly important to me. Frankly, I am sickened by the commercialization of what is, essentially, a holy day. A day to celebrate the birth of Jesus. When I was young we always had a nativity crèche and I remember imagining what it would be like to be born in a manger or barn. We were a family of very modest means but I always considered myself very lucky to live in my grandma's two-family house with my parents and brothers. I thought about people I knew and saw in my neighborhood who were much less fortunate than us. I was happy to be safe, warm and loved.

When Christmas day would arrive my brothers and I, of course, couldn't go fast enough to look under the tree to see what Santa left us; Lincoln logs, Tinker Toys, clothes and the like. It was wonderful but what I really liked was dinner that my grandma and mother worked on for hours beginning on Christmas Eve. Coming from an Italian family, it was all about the, antipasto, raviolis with different types of meat and the Italian pastries for dessert. It was family coming together and celebrating the holiday. More than anything, I miss my family the most.

Like most families, traditions serve as the foundation for the generations that come after us and in our house we've got a few at Christmas. Our family gets together and puts the tree up in mid December and decorates it with ornaments, some of which go back to my family, and we've got our own and each one has a story and some are invariably recounted by one of us. We've got some real gems that our kids made when they were young as well. Finally, is the placement of the angel of the top of the tree. Last year my son lifted up my granddaughter to place the angel and the torch was passed. All the while, old and new Christmas music is playing in the background. My son has been reading T'was the Night Before Christmas for many years on Christmas Eve but I think in a year or two my granddaughter just may inherit that honor also. We hang our stockings, put out the reindeer food and awake on Christmas Day to open our presents.  Later in the day we sit down to dinner and, after grace, savor the holiday meal that my wife and brother prepared. I hope this tradition lasts in my family long after I'm gone. It makes me happy and grateful for all the blessings I've received throughout my life.

Wishing you all a happy holiday season and hope you don't caught up in the diversion. Merry Christmas from my family to yours..

Intersectionality and Independent Living

Don't look now but there are new leaders in the independent living movement! It's an intriguing development that, unfortunately, has very little to do with the broad disability community's work in leadership development over the years.

In Massachusetts there are several new leaders who are mostly women with disabilities. They are college-educated and embrace community organizing and work in social justice and equality. They’re pushing for IL to go beyond its current paradigm and work in other areas and systems of oppression, domination or discrimination. They see the common thread of disability running through other social and cultural categories that have typically been siloed such as gender, race, class, sexual orientation, religion, age etc. They are also asking the tough questions like "why is the IL movement predominantly controlled by white men?"

Intersectionality, as it's known, is not really new but people with disabilities never really got pulled into other social movements. As ableism is further defined and incorporated into the categories of systemic injustice and social inequality, it is slowly becoming part of the paradigm. Today, many colleges offer degrees in Disability Studies and nondisabled young adults also learn about the historic discrimination and oppression of people with disabilities throughout history.

I haven't been this excited about new leaders coming along ever. Why? Well, think about it; by building relationships with other oppressed groups, the IL and disability rights movements in turn become strengthened. The opposite is also true. The stronger the coalitions become, the more sensitized each of the groups become about each other's issues and that is leading to a major sea change.

I do believe we are witnessing the makings of a revolution and, I for one, think it's long overdue.

Don't mourn, organize

For people with disabilities who employ Personal Assistants there is cause for great concern. Recently, the Department of Labor issued new guidelines relative to overtime payment for Personal Assistants. While it does address the long-standing need for overtime payment, it also creates an opportunity for state Medicaid agencies to use it as an example of a "budget buster" and rein in spending in the program. This is often accomplished by putting a cap, or limit, on PCA hours or by requiring a greater number of Activities of Daily Living to become eligible as was already done by the Baker administration. If we don't organize a grassroots movement to keep all the gains we've made in the program, we may lose valuable long-term services and supports that keep us living in the community.

We have to work with the administration to make sure that we know what the state's plan is to support and implement these changes and whether any anticipated additional costs will be in the FY 17 budget. Once we know, we'll be ready for a plan of action.

Plans are actively underway to create a coalition of PAS users who will work with state officials and legislators to ensure that the MassHealth PCA program doesn't fall prey to cost-cutting by bureaucrats and legislators. Cutting costs parlays into a rollback in services and reduced availability. We will work with the existing PAS coalition and other groups to enhance our mutual goals. When we're together, we are stronger.

Don't Mourn, organize!

The Unkept Promise of the ADA

 As we prepare to celebrate the 25th anniversary of the Americans with Disabilities Act, I am very introspective and do strongly believe that we've made extraordinary gains in community living, access to public places, including transportation and telecommunications but we're still the poorest minority group in the world. Here in the US, 80% of people with disabilities don't work. We've been lulled into thinking that life on SSI or SSDI, hence poverty, somehow is sufficient and has become the norm. By default, poverty is our lot in life, never having more than $2000 in the bank at any one time and fighting for precious subsidized housing. Living on $9000 a year keeps us from the basics of the so-called American Dream; working hard to save money to buy a home, provide for our families, and generally achieving success and prosperity.

I spoke to a group of young adults with disabilities last week and asked them if they thought living in poverty was an acceptable future for them and, to a person, each was vehemently opposed but when I asked if they knew about SSI and either had it or wanted it, most everyone thought it was a good idea. As leaders, we've failed young adults by not mentoring them early in their lives to build leadership and set the bar higher than a life of poverty. On some level, it's our fault but naturally, there's much more to the story. The Social Security rules are completely biased toward a future on the public dole by penalizing people when they go to work in such a way that the fragile foundation beneath us is pulled out completely. It's too black and white and there needs to be a less risky path out of benefits to employment that rewards work. The same is true of Medicaid especially if you rely on it for Long Term Services and Supports like personal assistance. If you go to work you lose your Medicaid and your support system goes away.

 Both systems have tried projects and initiatives to encourage employment and provide an opportunity to keep some or all of your benefits but, in general, they've failed. So, as a community, we need to redouble our efforts to push for full employment and I can't think of a better time to make that commitment than now. Let's fulfill the promise of the ADA and bang away at the systems that have marginalized us and kept us in poverty. Let's work with the Congress and the president to start over and completely revamp Social Security, Medicaid, Vocational Rehabilitation and Labor and Workforce Development to create and keep a permanent pathway out of poverty and into mainstream employment.

The union dilemma. Can we peacefully coexist?

Despite our common goal to get PCAs better wages and benefits etc. the disability community and the union often are at odds with each other over issues primarily related to consumer control of the program. The union has as its mission the goal of organizing workers to fight for their collective agenda and using dues to pay for salaries, infrastructure and political lobbying. People with disabilities who started the program certainly want their workers to get better salaries and benefits and have fought for years toward this end well before the union became involved. As the PCA program grew, the union saw an opportunity to organize and in the early 2000's they to filed legislation creating a union without any input from the Massachusetts disability community with no provisions for consumer representation let alone control. This is when the distrust between the two groups began. The disability community eventually found out and killed it in the legislature before it could go forward. This led to a sit down with union organizers and ILC directors to address the problem and seek common ground. This process went on for a year or more; each side finally agreed on a cooperative model that later became the PCA Workforce Council that we have today.

It operates with the Commonwealth as the employer of record for PCAs and can bargain with the union through arbitration for wages, benefits, etc. PCA users, for the first time in over 30 years are not really involved in fighting for cost increases for PCAs like we have in the past. The union has assumed this role but there is a cost; we've surrendered control over this process, which is far-reaching, and the results have not always been positive. For instance, a year ago the union again filed legislation without the disability community’s involvement that required a mandatory PCA Orientation without the option for a PCA user to provide the training, which has always been the practice. Consumer control is key in this area and the legislation completely ignored it. Again, the disability community learned about this union action and killed it in the Senate before it was enacted. The level of distrust was dialed up a notch. This time the PCA Workforce Council, acting on behalf of the broader disability community conceded to the union and, with a token amount of consumer input, created a new state sanctioned mandatory PCA Orientation. The so-called PCA user option allows for people with disabilities to use a predetermined curriculum to train their own PCAs as an attempt to satisfy the need for consumer control but, again, this was done in a virtual vacuum and the three-hour mandatory curriculum is a heavy medical model that accomplishes nothing other than to give the union a platform to promote themselves. Other than that, there is nothing of any real value and some find it offensive. Little by little we are losing control of our own program to the union and now the state through the Workforce Council.

The struggle rages nationally as well. In an attempt to get overtime pay for PCAs who work more than 40 hours per week, which on its face is a fair proposition, the national SEIU worked with the federal Department of Labor to create a new rule that would require this practice in every state without any new resources. The disability community opposed this rule and fought to have it vacated because the reality is that absent any new money, state Medicaid agencies would have no other option than to put a cap on the number of PCA hours a person with a disability needs to live independently in the community. This will have devastating circumstances and many people will be forced back into institutions as a result. Again, there's the struggle between the disability community and the union.

The union won't come right out and say it but they paint PCA users as selfish and not interested in workers making a living wage but that's far from the truth. Remember, we need PCAs every day of our lives in order to live independently. No one knows PCAs better and more intimately than we do. We are not hospitals and nursing homes and other large corporations trying to screw workers out of a livelihood. In fact, in Massachusetts, PCAs are paid better wages than Certified Nursing Assistants who work in hospitals and other skilled nursing facilities and that's largely due to the enormous amount of work that was done over decades by PCAs and PCA users working together long before the union ever thought of getting involved.

I've been a blue-collar Democrat all my life and have worked with unions to support political candidates, fight for better working conditions, close down institutions and yes, get better wages for PCAs. I've come to realize that we must coexist but we have to be vigilant about how we work, communicate and respect each other. Onward!

Independent Living philosophy and service delivery; a continuing challenge for Independent Living Centers

Many years ago as I was starting the Northeast Independent Living Program, a friend of mine  who is still very active active in the Disability Rights movement warned me against including Personal Care Assistance as a service because of the inherent medical model requirements. I struggled with his advice and did it anyway because I felt like the need was so great. Because of his warning, however, I purposely controlled its growth so that it didn't dwarf other programs for people who don't need PAS but still have disabilities. It wasn't easy but it worked and other programs grew that served people with psychiatric disabilities, Deaf and hard of hearing, cognitive, etc. In Massachusetts, if an ILC chooses to provide Personal Care Assistance they must employ/contract with a Registered Nurse and an Occupational Therapist to do evaluations of need and subsequent re-evaluations. It flies in the face of the non-medical model of an ILC, right? Well, yes and no. If done properly, administering this medical program serves a huge need and won't unduly influence the philosophy and practice of the Center. Some haven't fared as well and people with physical disabilities are, by and large, their primary disability group because the income from administering the program has dictated their staffing and outreach priorities. The basic philosophical tenet of cross disability has, essentially, fallen by the wayside.

Now the stakes are even higher; with the Money Follows the Person and the Duals Demonstration federal waivers, Medicaid, and the medical model that it represents, have reared their heads again as ILC's try to do the right thing to get people with disabilities out of nursing homes and assist in getting good quality healthcare from participating healthcare plans for their consumers who are receiving both Medicaid and Medicare. The demands on participating ILC's by state Medicaid agencies  to play more of a "clinical role" and jump through endless hoops and never-ending paperwork that, frankly, hinders their ability to get the job done has begun to significantly challenge the IL philosophy more than ever.

We are at a crossroads as a movement and together we must get in front of this problem before we lose our souls to the medical model. It's hard because there's nothing diabolical about trying to get people with disabilities good services to live independently in the community outside of nursing homes and other institutions. But at what cost? 

Back together with Eric Neudel and Alison Gilkey on an exciting new project

I've just agreed to join my friends Eric Neudel and Alison Gilkey, principals of Storyline Motion Pictures (known in the disability community for Lives Worth Living and the Great Fight for Disability Rights) on their latest project which is a Disability Rights Museum on Wheels. The mobile Museum will travel around the country highlighting areas such as eugenics and the people who fought against this movement; modern disability rights; emerging technologies and a look at post ADA legislative and judicial advancements in disability rights. Great to be working again with such creative and committed visionaries.

Mandatory PCA Orientation threatens consumer control

Recently the Massachusetts PCA Workforce Council made an agreement with SEIU that now requires all PCAs to go through a three-hour "orientation" that was developed with almost no input from the disability community. Many PCA users have received information from their Fiscal Intermediary spelling out the requirements and the punitive actions that will be taken against PCAs who don't go through this mandatory training.

This so-called orientation is being coordinated and delivered by SEIU and although it does allow for PCA users to provide the training to their PCAs hired after January 1, 2015 the state sanctioned curriculum must be used. I received a very derogatory and condescending notice from my Fiscal Intermediary that, not only forces me to either train my own PCAs or require them to go to a training but it also clearly states that PCAs who don't go through this training will have their wages garnished until they do. How can the union claim they represent the well-being of PCAs but, at the same time, be a part of the process that reports them to Medicaid if they don't attend a training and tacitly support garnishing their wages. It's a complete contradiction.

Further, I've trained my PCAs for close to 40 years and I have a well functioning system with excellent PCAs. Why is the state requiring this burdensome process that ultimately takes away our control? Additionally, PCAs have jobs and family obligations and don't have time to spend three hours going to some training that they may not want. I have one PCA who left after I told her she had to go to a training.

If you are outraged and want to let the Workforce Council know how you feel then please plan to attend their June 9 meeting to be held at One Ashburton Place, Boston, 21st floor from 2 PM-4 PM. Many of us will demand that this orientation be made optional and that PCAs not be punished by having their wages garnished if they don't attend. I hope you can come in person or submit written testimony. Nothing About Us Without Us!