Disability, Personal Care

Caring for Those Who Care for Us: Paid Sick Leave for Personal Care Attendants

My personal care attendants are, for the most part, men and women of extraordinary dedication.  I expect that dedication, I am grateful for it, and I need it, because the work that they do is critical for my life.  As such, I often ask them not to call in unnecessarily.  Finding coverage, especially on short notice, is difficult, and going uncovered isn’t an option, unless I want to end up dead or seriously ill.  As I explain to them, this is not the type of job to which to call in just because you are having a bad day, or feeling a little off.

That said, I also make it very clear that I don’t want them to work if they are truly sick.  It’s not good for me, in that I might get sick.  It’s not good for me, in that they might get more seriously sick, and become unable to help in the future.  Mostly, it’s not good for me because I find the idea of forcing a sick person to work to be inhumane, and to make a mockery of the very dedication that they show me by working.  And yet, every time it happens, we are faced with a horrible dilemma.

The lack of paid sick leave in this country is as horrible as it is nearly universal.  A brief overview of attitudes and issues can be found in this July 28 article by Washington Post columnist Catherine Rampell, celebrating a new New York City law to the contrary.  Describing the economic incentives behind the issue, Rampell says colorfully:

As you can imagine, most employees who arrive at work after puking their guts out don’t do so cheerily. They knowingly put others’ health at risk for two key reasons. One is that they can’t afford to miss a shift. The other is that they fear getting fired for the great sin of missing work because of illness. And in most of the country, businesses can fire workers for missing work, regardless of the reason.

Now, let’s stipulate that I would not fire my employees for calling in sick.  That said, I am provided a fixed number of hours by the Commonwealth of Massachusetts with which to pay personal care attendants.  Even assuming that the program allowed me to use those hours for sick time (it almost certainly does not), I would need to use those hours to hire a substitute for the sick attendant. Thus, I and my employee are stuck.  One or both of us will suffer.  Either they will come in sick, and we will both suffer, or I will mandate that they stay home, and they take a financial hit.

The New York law, which appears to be limited to employers of five employees or more, will not address this issue.  By creating a carveout broad enough for personal care, the Legislature relieves state payors of the obligation to pay this important benefit.  Thus, my New York counterparts remain powerless to provide it.  It is yet another case where people with disabilities need to oppose that which is best for them and their workers because the alternative is to do without necessary services.  A similar situation arises with regard to mandatory overtime, as I discuss in an earlier post.

In Massachusetts, we have the power to change this.  On Election Day 2014, ballot question number four will be put before the voters. I leave the full text of the question for you to peruse, but the most important feature is that the bill specifically addresses personal care.  Recognizing the importance of this category of employee, the ballot question solves this in the best way that I’ve ever seen.

It makes sick time available to all employees, though, presumably to protect small businesses, only requires paid sick time for businesses of 11 employees or more.  Then, the master stroke.

For almost all purposes, PCAs are considered employees of the consumer, and this is very important.  For this initiative, every PCA under a State program is considered an employee of a particular state department.  Not only does this meet the 11 employee threshold, but it makes it very clear that it is the State’s responsibility to provide compensation for that time.  If this measure passes, every PCA in Massachusetts will be entitled paid sick time accrued at the appropriate rate and every consumer will be certain that that pay does not reduce the number of hours that they are allowed.

If you live in Massachusetts, I encourage you to vote for this.  If you do not live in Massachusetts, but you care about justice for this important population of workers, use the link proposal as a template in advocate for it in your state.  Let us do a little more for these workers that do so much for us.

Disability, Personal Care

Mourning a Mentsch: The PCA Who Became My Friend

On July 29, 2014, I lost a friend.  Stefan Schack, (who would probably be protective of his age even in death) died in his early 40s.  Almost all deaths hurt those of us left behind, and tragic deaths, far too young, hurt more.  But, in the clarifying pain of that loss, and as I begin the slow transition of celebrating his life, rather than morning his death, I am forced to reflect upon the nature of our friendship, special, unique, and to my reading audience, informative.

See, Stefan and I did not start out as friends.  We met the day that he interviewed to become my Personal Care Attendant.  I was taken immediately with the eloquence, energy, and gregariousness that he brought to his interview, and he was immediately my first choice for the job.  So I was disappointed when he called me a few days later and said that, upon reflection, he couldn’t take the job, because it might interfere with his day job.

Shortly thereafter, I had a weekend position open up, and before I posted it, I thought I would call the interesting fellow who had turned down the weekday shift.  Stefan accepted.

Now, Stefan was my kind of people.  I could tell immediately that we had compatible sensibilities, world views and senses of humor.  For me, I usually see this as a stern red flag.  It is important, I often tell people, to remember that your PCAs are first and foremost your employees, and you need to make sure to maintain a certain degree of detachment.  You may have to fire this person.  You may have to give them pointed feedback if they are not performing their job appropriately.  They may quit, and, trust me, when someone quits, you remember that they were not your friend.

So, I laughed with Stefan from day one.  We joked, and we turned the work of taking care of me into his much fun as possible.  (I would give nearly anything to have one photo of Stefan, wearing  one of my hand towels as a “do rag”, which he wore to keep the sweat out of his face when he was showering me.  He was particularly partial to one that I had in bright yellow and one that I had in lavender.  He said they were his colors for his gangs “the Sunnyside up’s” and “the lavender lug nuts.”)  Our mornings were pretty cool, but part of Stefan’s gift was that he never forgot that he was there to help me, to meet my needs.

Stefan began working with me as certain parts of my health were in sharp decline.  The task of caring for me was not only becoming more difficult, it was changing from week to week as doctors would offer new strategies to address mystery issues.  Unlike his weekday counterpart, Stefan did not have a healthcare background.  His primary job was in technical training at a law firm.  But, as we learned together to embrace foreign medical concepts like laxatives and enemas, the sorts of things that both of us found a little bit icky, he embraced the duties of my care with a compassion that was unmatched.  I honestly think that he was among those most dedicated to finding some way to recapture my quality of life that was slipping away.

And that was the primary nature of much of our relationship.  Almost all of our interactions were paid, and frankly, it would not have occurred to me task for free help from someone who had come to me in part to improve his economic situation.  Yet, in the course of that paid work, his compassion and enthusiasm from my care was incredible.

As was his concern for my well-being.  Stefan would drop almost anything to come to me if I was in need.  Those of us that rely on personal care live on a bit of a teeter totter.  When our care is good, we can achieve the same heights as anybody else.  But that success balances on the whims of the individuals that we rely on to keep us functioning.  Part of mitigating that is hiring good people, but another part of it, given that there will always be people that let you down and unforeseen circumstances, is to have a few people that you know you can count on when everything else goes to hell.  From 2011 through 2014, Stefan served in that role for me, competently managing to protect enough of his time to see to his own needs while never leaving me to feel that mine might go unmet.

Somehow, over the course of this unflagging dedication, we became friends.  Some of this is because of the endless hours spent laughing, joking, and dreaming of the future while we were doing the work of my care.  Some of it is because of the mutual emotional support that we provided each other through life changes, especially as he helped me come to terms with the end of my engagement.  Some of it is because we were just two compatible people.  But a big part was, how could you not come to feel close to someone that takes such good care of you?

At the end of the day, my care was at the center of our friendship.  Stefan was a self-proclaimed foodie, but we rarely ate together.  Stefan was a wine aficionado, but I believe we never once drank together.  I don’t think I ever met one of his friends, and he only met mine if they were coming to stay in my house while he was at work.  It’s true that, in those precious moments of care, we shared many a hope and dream, but always within that structure.

And so it is fitting that my last face-to-face interaction with Stefan was as he helped me to pack my apartment, and saw me off to my new life in Boston.  It is also fitting that the first time that he ever did anything for me for free was when he cleaned up my apartment after my departure and returned my Verizon equipment.  See, our relationship was transitioning, and it was no longer important to maintain that structure.

I was leaving New York.  Stefan wasn’t going to be my caregiver anymore, and I think we were both looking forward to building a new more social kind of friendship as that role was left behind.  We were talking about a visit, this summer, and reading the various remembrances that others have of Stefan, I bitterly resent that we have missed the opportunity to build that new, next kind of friendship, around bars, parties, and urban landscapes.

And yet, I am grateful to Stefan.  Not only for the friendship and peace of mind that he provided over those years, but for demonstrating to me just how it is that one can maintain an effective friendship inside of a truly professional care relationship.

I have had a few other caregivers become friends.  Usually it was because the actual professional part of our relationship didn’t last very long.  Or because of truly unique roles.  In one case it was someone that I quickly came to view as a brother, (his kids now call me Uncle Matan) in another someone to whom I still refer as a second mother.  What Stefan showed me is a model for a friendship that works inside of the care relationship, by never losing sight of three things: first, the primary purpose of the interactions remains my care; second, I am requesting labor of this friend and should be prepared to compensate them just as we all expect to be compensated for our professions; and third, that, friendship aside, Stefan understood the importance of drawing boundaries, of understanding that our friendship did not mean that he could compromise himself for my care any more than one would compromise oneself for any other job.

These are the three traps into which consumer/PCA friendships can fall, which will usually destroy both relationships, professional and friendly.  Often, a PCA who becomes a friend can forget that there is a job to do and that their “friend” is still an employer with expectations that their needs will be met.  This can often lead to explosive partings.  The other two risks are paired, that the line between favors and shifts might blur, and ultimately become exploitive of the PCA friend, or that the PCA friend will become so committed to helping the consumer friend that they neglect their own needs.  Either one will destroy a friendship in short order.

Somehow, Stefan managed to navigate all three and become a true friend.  It created a strong basis that we thought would carry us for years to come.  I can only attribute this magnificent balance to the superb human being that he was.

And so, my friend Stefan, for whom I am grieving, not only made my life immeasurably better by the care and friendship that he provided.  He showed me a model, however rare, of the way for true friendship to grow.

In a week that has seen much PCA drama for me, I don’t know whether that balance was a once-in-a-lifetime thing.  I hope not.  I know that if I find it again, I will see and hear echoes of Stefan, the PCA who became my friend.

May his memory be for a blessing.

The family has requested that in lieu of flowers, a donation be made to either the American Heart Association or to Housing Works (NYC) in Stefan’s honor.

Disability, General, Independant Living, Judaism, Personal Care, Sexuality and Body Image

Finding My Voice: A Look Backward, A Look Forward, and A Request

Anyone who knows me will tell you that I talk a lot.  Loud, verbose, outspoken; these are adjectives that I don’t think anyone would deny me.

And yet, as of May 1 of this year, despite more than two years in public office, more than 15 years of leadership positions, and well over 25 years of public speaking engagements, you would have been hard pressed to find more than the occasional public record of my thoughts and opinions on anything.

It’s not that I didn’t have them.  As a liberal New York Jewish lawyer (at least according to this conservative blogger), I have opinions about just about everything, whether I have any business talking about it notwithstanding.

It is rather that I really didn’t think that anyone would want to listen to what I had to say.  Living in the echo chamber of my liberal, Jewish, disability activist world, I really wasn’t sure that I had anything unique to offer.  Nonetheless, after years of gentle urging, I launched this blog two months ago yesterday, first at www.matankoch.svbtle.com,and then this week migrating over to WordPress, where we are right now if you are reading this.

I have been overwhelmed by the response.  In the two months that we have been live, I have received over 3000 visits, including over 1000 to WordPress this week alone.  The comments, feedback and encouragement, along with the flattering shares of those who push my words to even larger audiences have truly moved my soul.  It’s enough that I encourage other people to take a stab at blogging, if you think you might have something to say.

I have also had the opportunity to find my voice, and share my opinions on topics about which I am passionate.  My three top posts, each of which has had well over 700 views, have each allowed me to speak to an issue that I feel is timely and important.

In “Chutes and Ladders”, I got the chance to explore with you my take on the most critical policy barrier facing employment of people with disabilities.  I was truly gratified by each of you that responded that, having been previously unaware of this pressing issue, you were interested in opportunities to change the paradigm.

In “From Objects of Sympathy to Objects of Desire” I explored with you the evolution in the societal conversation around the sexuality of people with disabilities, a critical component to understanding us as fully fledged human beings.  From feedback in some disability fora where it was reposted, I know that I was lucky enough to give voice to an issue which troubles many of us that is completely hidden from many in the able-bodied world.  Then, spurred by the powerful words of my friend Ariella Barker, Ms. Wheelchair North Carolina, I examined the effect that this distorted conversation has on the body image of people with disabilities, in “It Starts in the Mirror.”

Rounding out the top three, this week I had the opportunity to share the incredible power of my camp experience with you, and the benefits that I think that camp presents to people with disabilities in, “My Launch Pad.”  I have been incredibly moved by the reminiscences and kind words of so many of my camp friends who spoke of the positive impact that my inclusion had on their lives, and I will be following up in the near future with a post focusing on the amazing human element of my camp experience, highlighting some of the thousands of people that made my experience what it is.  Even more encouraging, the post is beginning to circulate among those who work in the world of inclusion, and I would love to see the net result be that more people are afforded the opportunity that I had.

But now we come to the request.  In the two months that this blog has been active, I have written more than 30 articles.  I encourage you to check them all out, if only because many of them were written on issues about which I feel very strongly.  That said, I’m running a little low on inspiration.

I started this blog because other people felt that they had topics on which they wanted to hear my opinions.  So, I’m asking you, my readers, to tell me if there other things that you would like to hear me write about.  I’ve set up an email address, matansblogideas@gmail.com, specifically for that purpose.

Please feel free to send me articles questions or thoughts which you feel could be good potential subjects for this blog.  I may not write posts about them, as I really don’t believe in writing on any topic unless I have something worthwhile to say, but I promise to at least respond telling you that a post is on the way or explaining why I don’t feel qualified to express a particular topic.

I am gratified to have had the opportunity to start some important conversations.  I fully intend to continue.  I gratefully welcome your help and participation in this mission.

Disability, Independant Living, Personal Care

Only the Best for Our Children: Sometimes the Best Care Is Finding Someone Else

I have never met a parent who did not hope to predecease their children.

A gentle decline and death at a ripe old age is the natural end of a life well lived.  Like everything else, this natural progression takes on a different meaning in the context of disability.

Everyone, whether or not they have a recognized disability, begins life in the care of his or her parents.  For some, that care ends very early.  For others, especially those with disabilities, it often persists.  I am 32.  My parents are 65.  16 years after moving out on my own, my parents still play an ever dwindling role in my support system.  It is small enough that, though I pray to God that they live many more decades, my lifestyle would not be significantly impacted should they pass.

This was by conscious design on both of our parts.  Before I reached the double-digits, I spent time at summer camp with hired care.  In high school, as my size and ever more complicated schedule made it more and more difficult for my mother to provide substantially all of my day-to-day care, we were hiring what limited help we could afford, and I was learning to direct them.

When I departed for college, and had access to steady state funding for personal care for the first time, we hired professionals and never looked back.  Sure, there were years of lessons to be learned in proper hiring and supervision.  Sure, especially in college, my mother was 90 minutes away in an emergency.  Sure, to this day, were I in serious need, she would be on the highway, were she not beat to the punch by my sister, brother, or law school best friend, all of whom live closer.

Still, my parents and I understood at an early age that my care needed to be professionalized, that no one or two people, no matter how loving, could be the foundation of my support, not only because they had lives to lead and jobs to do, but because, by the Grace of God, I should live many years beyond them, and certainly beyond the now bygone days when they could be physically responsible for a substantial portion of my care.  I lost a little TLC in professionalized care, but I have gained the ability to always see to my own needs.

I was troubled, therefore, when I read this article about parents caring for their 16-year-old son.  The article describes two incredibly devoted parents caring for their son with a disability.

In the article, the parents freely acknowledge that they worry about who will care for their son when they are gone.  They question whether he will be able to advocate for himself, and they pray for the strength to keep on giving.  This is touching, and upon first read I was overcome with affection for this family.

Yet, upon reflection, this concerned me.  We learn from the article that the State pays for at least some of the young man’s care, and that this money is paid to the mother.

Now, don’t get me wrong.  I fully support the structure of State programs that allow family members that provide care to be compensated for the opportunity cost of the ability to work outside the home.  In the life cycles of families, this can be critical.

That said, were I counseling this family, I would suggest they take some of these funds and begin to figure out to what degree this young man can self direct professional care, train him to the utmost of his abilities, and find strategies to compensate for those things he can’t do.  Like my family, I would love to see them develop a model that works while the parents are still fully able to provide the care during the growing pains.

As these parents prepare for their golden years, let them live their own natural physical changes secure that the well-being of their son is not dependent on the strength of their backs.  When they reach the end of their journeys, let their son be able to celebrate their lives and process his loss without needing to simultaneously worry about whether his basic needs will be met.

Every parent knows that one day they will be no longer able to care for their children.  Many children can become self-sufficient, some will always need external help.  Either way, critical part of raising a child with a disability is to figure out strategies to ultimately write yourself out of the support system.

In cases like mine, and the parents in the story, where the individual receives state resources, it’s about finding ways to use those resources so that any one person is not indispensable.  For those who have no means for anything other than family care, the obligation falls upon society.  We owe it to these families to give them the resources to see that as their children grow up into adults, they are provided with ways that their needs will be met even once their parents can no longer provide.

The parents in the story are right to worry, and it certainly never hurts to pray, but I strongly recommend that everyone take action on those worries while there is still something that can be done.

Disability, Independant Living, Law and Lawyers, Personal Care

Labor Protections for Personal Care: The Money Is Fuzzy, the Morals Are Clear

Since August 1998, when I was 16 years old, I have been dependent upon a unique class of professionals for all of my physical needs. These hard working men and women were integral to my earning two Ivy League degrees, my professional success, and really anything that I have achieved since leaving my parents’ home in 1998. On the East Coast we call them Personal Care Attendants, other regions refer to them as Personal Assistants. They, together with the slightly better trained Home Health Aides and Certified Nurse’s Aides, make up the incredible corps of giving, caring individuals that facilitate the lives of countless people with disabilities in order that they can live independently.

It will surprise few who are familiar with the economic realities of this country that, demographically speaking, this population of workers tends to be only high school educated (if that) and disproportionately minority, immigrant and female. It may be more surprising that, currently, due to a companion care exemption in the regulations implementing the FLSA, these individuals are not provided with mandatory overtime in excess of 40 hours, let alone items like sick time. (Arguably, even the current exemption is over applied, but that is outside of the scope of my post.)

The Obama administration has proposed regulations to end this exception, and they take effect soon. This is causing great consternation in the disability and caregiving communities, and Jeff Rosen, the Chairman of the National Council on Disability, on which I served until recently, has written a letter asking Labor Secretary Tom Perez to delay the implementation. The purported purpose of this delay is to

“allow DOL [Department of Labor] and the Department of Health and Human Services (HHS) more time to work with States as well as the disability and aging communities to understand the policy and operational issues, develop workable solutions on key components, and determine an appropriate course of action.”

With due respect to Chairman Rosen, this is a naked delay disguised with bureaucratic obfuscation. I was one of the moderators of the January 2013 meeting referenced in the letter, and the policy and operational issues could not be clearer.

As I said in the introductory paragraph, we who use these services are deeply aware of the value of the loyal service of these dedicated individuals. None of us want to see them get anything less than the very best, and not a single voice argued that they deserved anything less than that which is promised to other American workers.

Rather, there is a reality that no one wants to talk about. The vast majority of Americans, myself included, receive these services through government programs, the most common of which being Medicaid. Practically speaking, current state Medicaid budgets could not cover time and a half for these workers, and the likelihood of these budgets being changed simply because the Department of Labor changes the regulations is nonexistent. So what would happen?

Every current care attendant, personal assistant, or home health aide would be cut safely below 40 hours per week. I know this argument is often used to attempt to invalidate the goals and protections of the FLSA, but ask the reader to recognize that the incentives are entirely different when the person making the payment decision is completely distinct from the person benefiting from the labor. If a factory owner wants to split shifts to avoid paying overtime, that owner bears the cost of the labor inefficiency of multiple workers in the same job. The choice, whether to pay more or hire more, is a simple economic calculation, made by the decision maker. In this instance, neither the worker nor the beneficiary of the labor is making the decisions. To the budget official making Medicaid decisions, quality and continuity of care is only the most abstract consideration.

Here, essentially, everyone loses. The person with a disability loses because rather than have appropriately designed shifts balancing the needs of worker and consumer for maximum efficiency for both, they must arbitrarily break at the 40 hour line. Further, as the expression goes, good help is hard to find. To remain under 40 hours per week, the consumer may need to hire more people, and face the difficulty of fielding a larger team of staff with good skills and good fit. The person who loses most of all is the worker. There is no question that the worker would be better off working 60 hours where 20 are at time and a half than working 60 hours at time, but the real distinction is 60 hours at time versus 40.

What, then, to do? Most disability advocates are pushing strongly for the status quo, and I agree that the status quo would be better than the scenario that I outlined above. But what about real courage? What about saying to the Department of Labor and to the States “we support the proposed rule, Mr. Secretary, but we demand that part of self-determination is to free up the funds to authorize overtime as we see fit.” This would be a courageous option, protecting the rights of our caregivers while ensuring the needs of our consumers are met.

To my former colleagues, I say this. The answer is not difficult. Frankly, I have outlined our choices in two paragraphs. The hard part is gathering the conviction to push for the right decision, because this letter feels like merely trying to delay it.

Disability, Employment, Personal Care

Chutes and Ladders: Obstacles on the Journey to Employment For Personal Care Users

I do not actually remember the game Chutes and Ladders. I remember that there were chutes, and I remember that there were ladders, and I remember that there was some method of following a path based on a die roll to get to a finish line. It is entirely possible that both chutes and ladders were positive things, but for the purpose of this blog post, I am going to choose to remember that the ladders were a positive climb up, and the chutes a precarious pitfall that you hoped to overshoot with your die roll. The analogy works for me, so I am going with it.

One day a few years ago, I got a call in my New York office from a woman who heard that I was a working professional while using significant amounts of personal care. She was distraught, for she had just been offered a good job, making in the vicinity of $80,000.

Why, you say, should she be distraught? This sounds like good news. Alas, she was an individual with a disability who received her almost $100,000 per year of annual care from New York Medicaid. Further, under New York eligibility rules, if she made more than about $60,000 per year, (this year’s number is $59,388) she would lose her Medicaid. $80,000 was not enough to pay for care, let alone care plus living expenses. This Ladder had become a chute which would have made her unable to maintain her life. I did not have a solution at the time, save that my annual salary was $230,000, and that was how I paid out-of-pocket.

Around that time, I made a friend, a resident of New Jersey. He too, had a good job, and though not eligible for New Jersey’s Medicaid buy in, which had an even lower threshold than New York, as a former recipient of SSI meeting certain other conditions in New Jersey, he was eligible for Medicaid through a program under section 1619(b) of the Social Security Act. If you follow the link, you will see that this program allows individualized determinations of eligibility disregarding earned income for certain classes of people, including those dependent upon personal care. A little loophole though, is that, other than an exemption for earned income, he needed to meet all of the eligibility requirements for SSI, including making sure that his assets never exceeded $2000. This is not a typo. $2000, a threshold set in the 1980s and never changed. To receive his care, he could not save for retirement, or even create a decent contingency fund. These well-recognized ladders to financial success would have been chutes. His disability progressed, and he had to leave that job, and is now living primarily on fixed income. I wonder if that would have been the case if he had been able to save prudently, and invest.

I recently moved to Massachusetts, and did so precisely because they it is the only state I have been able to identify where eligibility for the personal care program is not precluded by income or assets. By happy accident, I applied for Medicaid while still officially making my law firm salary of $285,000 per year, so I have some interesting numbers. Massachusetts has a premium for people with disabilities above certain incomes that receive services. By way of example, had I been making $285,000 by the time I actually became eligible for Medicaid, I would have paid the monthly premium of $3650, but I would have had services.

Let us do some math. I submit that, in round numbers, my care will cost the State of Massachusetts $54,000 per year. Incidentally, I am by no means one of the most expensive recipients of care, but my own numbers are the easiest for me to access. I submit that there are few if any jobs that I could get in Massachusetts given my current realities (which still make me more employable than 99% of Americans) that would allow me to part with that much money out-of-pocket per year. As such, Massachusetts will be the guarantor of my care whether I am employed or not. This fact becomes even more immutable for others as care needs rise and income potential drops. Let us assume for a moment that if I were making $200,000 per year, my premium might drop to $3000 in Massachusetts. (I have made up this number, but it is not out of line with the numbers above.)

If I lived in New York, I would likely have to leave my $200,000 job because of difficulties paying for care and all other disability costs, even at 200,000. For instance, the rent on my accessible apartment with 24 hour building staff to limit my need for personal care was almost $3700 per month. If I lived somewhere cheaper, I would probably need more care to make up for lack of services. (Actually 200K might be just enough, but I am trying to work with round numbers.) Thus, New York would be on the hook for $54,000 a year of my care, plus likely subsidized housing, while the federal government would pay SSI or SSDI, and likely Supplemental Nutrition Assistance, all to allow me to live with an income of zero.

In Massachusetts, I would keep the job. I would pay $36,000 a year of my care, with Massachusetts picking up the other $18,000 plus assorted medical costs. Since I would be earning a good salary, I would pay my own rent, or mortgage since I could have assets, and I would not need to collect social security or nutrition assistance. Further, I would be paying taxes, so the net costs to the taxpayer would be even lower.

In this scenario, literally everybody wins. I win because I get the benefits of work, of Independence, and of disposable income, all while receiving the care that I need. In a period of decreased work, like the one I am currently experiencing, I would have savings to get me through. The taxpayers win because my ultimate price tag is probably less than a quarter of what it would be in another state, all while I am paying taxes, reducing the net impact. My employer wins because they get my labor and my talent. Society wins as we add to the population of productive adjusted members, decreasing dependence and poverty while increasing hope. By eliminating the chute, we all get to ride the ladder together.

Most states provide some kind of personal care, and those that do not provide institutional care, which is even more expensive and filled with other horrors and drawbacks that I will write about in another post. Only Massachusetts has set out this path to winning through work. I can literally see no justification for why it has not been adopted in every State save inertia, and ignorance of the financial realities. Unlike the need for more funding inherent in yesterday’s post regarding Personal Care, there is no state that would not save money, they just do not know.

So my reader, I share these facts with you. Share them widely. Share them with decision makers. Push for change. We will all benefit.