The Shoe Is On The Other Foot

I spent almost 40 years trying to support people with intellectual, developmental and physical disabilities. Yes, I say tried because the issues are so big and in many cases difficult when it comes to supporting people with disabilities. Systems, bureaucrats, politicians don't make it any easier.

I began my career in the disability field as a direct support worker and ended it as a nonprofit administrator. During that time, large institutions closed and people began to be accommodated in the things we all do, things like shopping, working, and playing. In simpler terms, just being able to live their lives like the rest of us.

While working in this field there was an inordinate amount of time spent talking about what we should call the people with disabilities who we were supporting - clients, participants, consumers and more. Eventually, I figured out after all the talk, that just calling people, people, or by their own name actually made the most sense. That's what you and I would want, isn't it?

Which brings me to the main point of why I'm writing this. I'm now a person with a disability, a progressive and incurable lung disease that every day prevents me from doing the most basic things and will eventually lead to my passing. Each day, something becomes a bit more difficult. Yes the shoe is on the other foot. Now I struggle to get from the front of my house to the back or to a doctor's office or a lab for an appointment or a blood test. All of these are difficult tasks due to my increased shortness of breath. 

I've also learned about how frustrating conversations with service coordinators or chronic care coordinators can be. These conversations are all part of an aspect of my health care and my health insurance. New and different people call to offer me help and assistance but most are unfamiliar with my disease (Pulmonary Fibrosis). I have to spend time educating them and in the end we usually agree there's not much they can do to help. Then they call again the following month and we discuss the same issues again.

It is becoming more and more difficult to get out and about. When I do venture out, I show up with my noisy and funny looking oxygen machine. I have to make sure I have back up electricity or batteries and even a small travel tank of oxygen. Of course its not just the oxygen. There's the tubing, 50' of it in my house, a tangle of trip hazards and 7' sections for travel. All of this has happened with the backdrop of a pandemic which has certainly added to the challenges. Questions arose quickly about vaccines. Initially challenges about where and when they could be gotten and then more questions about side effects relative to special conditions or diseases.

Of course with any rare disease that's life threatening, the issue of medications and prescription drug costs comes up. I currently take a medication that has the potential of stopping the progression of my fibrosis. But here's the challenge. It costs $10,000 per month or $120,000 per year and it comes with some pretty awful side effects. With my insurance I can get that cost down to $8,500 per year. Luckily, with the help of my doctor and a specialty pharmacy affiliated with a university, I was also able to find a foundation that has assisted in covering much of this cost. But there are many situations and medications that people battle over and few people realize how lives depend on those battles.

One of the things that was always frustrating to me when I was working with people with disabilities were  fights you had to wage for pretty basic medical equipment, including mobility equipment. Now I'm faced with the same challenges, being denied a non-invasive ventilator due to, not just expense, but because the insurance provider doesn't understand the equipment or its purpose. Appeals, appeals and more appeals lead to nowhere. The only real answer is finding a provider who will pay for and support the use of the equipment. Of course in our current system of health care, you can't just switch insurance any time you want, you need to wait for the new enrollment period.

I have wonderful care and support provided by my partner and spouse. The hardest part for me is realizing  the things I can't do anymore. Some are pretty basic things, others are more complex. I can't get down to the lake I love but I can see it from up above. Going out to other places or even just for a drive becomes more difficult as time goes on.

I have to fight dwelling on regrets and try to live in the present. In some cases that's easier said than done. I'm experiencing some cognitive and gross motor losses which make writing my memoir and this blog more challenging and I've found that I've had to cut back on those things. That of course is a disappointment but I'm going to keep trying. When someone asks how I'm doing I struggle to find the real answer. 

This is certainly not a call for sympathy or anything else. We all have to deal with challenges, some very real, others perhaps imagined. At this point I'm simply recording a journey that changes day by day. It's my own recognition that the shoe certainly is on the other foot at this point in my life.  I continue to learn through experience and understand more clearly much of the frustration I saw from disability rights groups over the years. Yup, we're 'Not Dead Yet' and we want to be treated fairly and with dignity. Something we all want.

Everyone Loves Frontline Workers, But........

My professional and personal experience when I talk about front line workers, has to do with people who provide direct support to people with developmental and intellectual disabilities. We call them Direct Support Professionals because they provide direct support and they are professionals in the way they do it. These are the people who work everyday, helping people living in various community settings to dress, to bathe, to toilet, to prepare and eat meals and to live as independently as possible. Much of my career was spent as an administrator of programs like this, although early on I had my own experience providing direct support in these and other settings. The Covid-19 crises, lock down and isolation orders have been especially difficult for people working and living in these settings.

There has been a lot said about front line workers over the past few weeks and we've all been forced to really think about who these people are - doctors, nurses, janitors, bus drivers, sanitation workers, grocery store stockers, clerks and so many more. Few though think about the people I mentioned above. With the impact of this virus they've continued their work, their mission of supporting people with disabilities and their independence wherever possible. Everyone loves these workers right now, families, administrators, legislators and governors. They are the saints and heroes who come in to work now every day and night as essential workers. Interestingly they were essential before this virus appeared. They're essential everyday. We can all agree on that.

Essential but.....yes there's always a but. The but here is that we don't pay them a decent wage, at least not in most cases. Most of these people work for under $15 per hour. Most are women. Most have families to support. Administrators say they don't get adequate funding to pay a decent wage. Funders including legislators, governors and taxpayers may say they love these folks in one breath but quickly point out that money just goes so far and decisions have to be made based on priorities. Hogwash, baloney, and a double crapola. If we learn anything from what we're all going through with this pandemic, it's that we have to recognize the value of all of the heroes that have been identified. We have to come up with long term solutions to pay these front line workers decent salaries or living wages. We have to stop ignoring their value. There is and will continue to be pressure on every level of government relative to funding and this current crises will make the economics worse, but all of us can help set priorities. Let's not forget the people we said were so great when Covid-19 struck. Banging pots is a nice gesture but a real paycheck is so much better.

Vulnerable and Facing The Coronavirus

All of the current statements coming from government and health care leaders are telling people to calm down relative to the coronavirus. The statements go something like, "if you're fairly healthy, your risk is very low and, even if you do get it, your symptoms will probably be like getting the flu and you'll easily recover". Exceptions? "Well unless you're elderly and have an underlying condition".

I am writing this from the perspective of a 75 year old man with COPD, Emphysema and diagnosed within the past 6 months with Pulmonary Fibrosis, currently using oxygen 24/7. Am I worried? I'd say more like scared out of my wits and my level of confidence in government right now is pretty low. And yes, I'm washing my hands.

Last July I was hospitalized with pneumonia which led to followup, various tests and my current diagnosis of Pulmonary Fibrosis. Living with that reality in itself along with the oxygen therapy, tank management. and restrictions on physical activity have brought mental and physical challenges. I've coped though with a lot of support from my spouse, family and friends. I've slowly gotten somewhat use to my disability, realizing that I am limited and will be from this point on. There is frustration and sometimes a sense of uselessness as household chores and maintenance arise. But, it is what it is and there are things that I can do, including writing and assisting some other people with a few things I know about which include technology, politics and organizing.

That's the backdrop from which I write this piece. Like so many others, I really do need to assess my daily interactions with people as the coronavirus spreads. I'm certainly not happy about having to do that or even to think about it. I currently participate in a pulmonary rehab program twice a week. It's basically cardio exercise on various pieces of equipment. Monitored oxygen is available along with classroom sessions on pulmonary disease management. Of course it's on the grounds of a hospital and in a setting where people are coming and going for their basic health care needs. It has been very helpful for a lot of reasons but now I probably need to look at how feasible it may be to continue participating as the coronavirus evolves. I have some time to make that decision but I'm realistic in knowing the time may come. Of course there are other interactions with people that will have to be assessed. We can call it self quarantine or distancing but it is an isolation from social interactions.

All of this is the dilemma faced by certain populations during a potential crisis like this. Government and health officials attempt to calm people but this is a reminder that people like me, who will be high risk patients if we get coronavirus can hear you when you reassure everyone that we're the only ones who might die. Not very reassuring to those of us with serious underlying conditions.

Transforming People's Lives

Last night (11/09/18) I had the opportunity to be a part of a kick-off event for The Arc of Schuyler's first ever Capital Campaign for what they've identified as a 'transformation' of their supports for people with disabilities, their families and the entire community of Schuyler County. It was an informative and fun event with lots of information and stories about the importance of the organization to people in general. The Capital Campaign is for a total of $1.75 million but the organization has been working behind the scenes and has raised a substantial amount of money through grants and donations from Board members and supporters that has left a balance of $280,000 to be raised.

The 'transformation' is the development of integrated employment opportunities for people with and without disabilities, and integrated employment training program and a community center that will include people and organizations from throughout the community.

Now I need to disclose that I was the executive director of The Arc for 32 years, so the organization is close to my heart. But I've been retired for 7 years and the agency has continued to meet the needs of people and families very successfully. One of the things they did last night was to share a short video that tells the story of how The Arc has impacted one family. Take a look at it here.

So that's one family's story and a great on at that. So.....if you want to support The Arc in its efforts, here's a link to a page where you can become a part of the Transformation 2020 Campaign:

The Arc Transformation 2020 Donor Page

Supporting People Who Support People With Disabilities!

Last week was a nationally designated week to recognize some really important and committed people. These people are called Direct Support Professionals and they do just that. They are the people who exist in every community providing necessary and real supports to people with developmental disabilities. Some of the people they support are very independent and need limited assistance. Others are in much greater need of supports for very basic needs relative to bathing, communications and all levels of personal care. Some of these Direct Support Professionals are in the state workforce and others work as employees of non-profit organizations who provide these services to the state as contract agencies. These folks deserve the recognition and our respect for the great job they do.

There is widespread recognition by the public, by government and very importantly by the courts, that people with all kinds of disabilities can and should be able to live as independently as possible in the community. This recognition has come through struggles by individuals and families over many years and even though those struggles aren't completely over, supporting people in communities in an inclusive manner is the norm. It couldn't happen without people willing to be part of this important support infrastructure.

A recognition week is nice and is generally accompanied by things like proclamations, special events, donuts, lunches and dinners. Thanks and awards are given sincerely by administrators and families and in some cases by the people receiving the supports. But there is plenty more that can be done relative to respect and recognition.

The reality is that many of these employees are on the lowest rung on the salary schedule. They work long hours with changing schedules, changing environments and rules. They become the lifeline for people they support. They become family and friends. It is no secret that there is substantial disparity between the pay for the same job of the state workforce and the private non profit providers and that needs to be rectified. But the really terrible truth is that many in the private sector are paid just above $10 or $11 per hour. This is because these services and supports are paid for by NYS through Medicaid rates that they send to the non profits. These rates don't allow for the $15/hr that the Governor of NYS is currently promoting in his call for economic justice.

If the Governor truly believes in economic justice, he should be the first to advocate for and provide the funding that would allow Direct Support Professionals to be paid a minimum of $15/hr with all of the necessary benefits. It will cost the state hundreds of millions of dollars but economic justice demands it. The people supported and the people supporting them deserve it.

A final thought on respect. The words Direct Support Professional say something and mean something. They are very clear. People who hire and support these people have to stop using lazy and disrespectful acronyms to define them. DSPs doesn't cut it and in fact helps to dilute the importance of the discussion about the importance of these employees. They are Direct Support Professionals and it isn't hard to use or type the words. Using the words educates and allows people to envision who these people are and what they do. Using the acronym allows and encourages politicians and the public to use the acronym and to understand less.

Finally, for whatever it's worth, I just want to add my thanks to all of those people who are out there, everyday, helping people to be as independent as possible and to be included in their communities with dignity and respect.

Hey Governor, It Takes Money!

How do we or the 'state' value work supporting vulnerable people - people with disabilities, the elderly, infants and children? Most of these groups of vulnerable people are supported by either the state itself or by private, nonprofit organizations who are paid by the state to take on that responsibility.

The people who take on this mission are hard working people, mostly young, mostly women, many people of color. They go by different titles, Nurses Aides, Certified Nursing Assistants, Teacher Aides, Instructors, Direct Support Professionals, etc. They perform tasks that range from personal care like bathing, toileting and feeding to more complex support around behavioral issues, employment training, community inclusion and independent living. The work is hard both physically and mentally. Sometimes care and support is total and other times the work entails helping someone learning to do things on their own, or teaching new skills. Then there's the paperwork, every 15 minutes to an hour - documentation, documentation, documentation. The people paying the bills want to be sure of course that the money is being spent correctly and wisely. In addition, due to issues of the potential for abuse or neglect, there is monitoring and reporting that might result in lengthy investigations, loss of pay or even in the loss of employment.

So back to the original question, how do we value this work? We tend to talk a good game. We make sure these people are talked about as wonderful, committed and special people, doing God's work, etc., etc. None of it pays the bills however. In the nonprofit sector, these employees make anywhere from $9 to $12 an hour on average. Their benefits vary based on the organization they work for. The state of NY, like other states, also continues to have employees who perform some of these tasks. Salaries tend to be higher in the government sector, sometimes close to twice as much as the employees of the organizations that the state contracts with. What a way to show value!

So now we have Governor Andrew Cuomo identifying one sector, the food service industry, as needing a review relative to a minimum wage increase. He has painted the industry as piggish with CEO's income in some cases exceeding $20M. No one on his staff has seemed to remind him, that people who he is responsible for funding, through contracts and reimbursement rates to nonprofit entities, are making barely more than current fast food industry employees. As a matter of fact, these agencies have in some cases fallen behind the food industry. Right or wrong, that is the reality.

So again, how do we value these hard working people in NYS who are supporting vulnerable people? It seems not much or to put it more crassly, obviously not as much as the value of a burger or southwest salad. How would you feel if you were treated this way? How would you feel if your economic stress was ignored while expectations kept increasing? The answer seems pretty obvious wouldn't you say?

A number of years ago and as a result of news articles about excessive salaries of CEO's at a few nonprofit agencies, Governor Cuomo tried to blame low salaries of direct support professionals on the high salaries of executives and administrators. As a result, he and the legislature capped CEO salaries in the nonprofit sector. That card has been played. It can't be played again Governor. The real issue is and always has been money and the direct level of reimbursement to agencies that government hires to do it's work. Priorities need to reflect that. Representatives of human service organizations and those advocating for them need to begin speaking up quickly and firmly, letting the Governor and the legislature know that these workforce issues need to be dealt with head on and that we all need to truly value the work of supporting vulnerable people. This has become an issue of economic justice for a sector of the workforce that needs more then just a good word.

Gov. Cuomo Makes A Joke of Wage Issue

Governor Andrew Cuomo loves to be the first out of the gate. He seems to think speed equals being correct on progressive issues. Being first seems to be more important then being correct or truly leading.

Today he tried to get out front on the issue of a living wage. This is a huge issue and one that has to be addressed by political leaders on every level. He stood in NYC in front of unions and union members wagging his finger and belittling and shaming the fast food and restaurant industry about the paltry wages they offer to their employees in comparison to company CEO's. And of course he's right. There are CEO's at some of those companies making up to $23million a year. And yes, the average fast food employee may make about $16K per year. One of the Governor's arguments and where he showed real anger was when he discussed the fact that many of these employees had to take advantage of state and federal programs like Medicaid, food subsidies, etc. He was outraged that the state, yes government, was subsidizing these businesses by providing these benefits. So far he sounds pretty progressive, right? Standing up for the little guy. Beating up on those corporate scoundrels who are always taking advantage.

Cuomo has tried to get the NYS Legislature to act on increasing the minimum wage to a meaningful level but they've resisted. So he's trying to find a new way to accomplish it or to create the atmosphere for negotiations with the other branch of government. He announced that he's creating a wage board to review the issue of a wage increase for employees in the food industry. It will report, recommend and potentially act on a new wage structure for those employees in three months.

First, let's be clear. Those employees that the Governor identified and was talking about today do deserve better - much better - from all of us. But so do a lot of other people and the last thing we need, especially from a supposed progressive, is to create classes of employees. Those who get a living wage and those don't, etc., etc. Who'll referee that scenario.

In addition, the Governor should think and get some facts before he wags his finger at other people. There's a whole other group of employees that are possibly in worse shape than employees in the food industry and they are in that situation because of policies and funding issues developed and supported by the Governor and his administrative and executive staff. These people also, sometimes have to depend on benefits provided by the government and taxpayers. There are many, but let me identify some specifically. They're called Direct Support Professionals. They support some of the state's most vulnerable and important citizens - some of the people they support are pretty independent but some need total support. They support people with many different types of disabilities, some physical, some developmental and some behavioral. These support staff are hired by nonprofit agencies who are paid by NYS (the Governor) to provide these services. In most cases the rates the agencies receive are inadequate to cover the costs of care and support. In most cases these agencies and the supports they provide have been routinely reduced, transformed and cut. These are good people, the employees and the agencies, who deserve better from their corporate leader.

To add insult to injury, the Governor created a well intentioned investigative unit called the Justice Center that can force an agency and one of their employees to be out of work, unpaid for days or months while they try to figure out how to investigate charges of abuse and neglect. The bureaucracy that was created does less to control abuse it seems, but certainly helps people decide about their career choice.

Good intentions are nice. They help us align values. But more is needed then good intentions. If Governor Cuomo wants CEO's of private companies to step up, if he wants the Legislature to step up, if he wants non profits to step up, he needs to look in the mirror and step up himself. He needs to put his money where his mouth is. He needs to recognize that the state of NY has to provide resources to pay people a decent and living wage especially when they are supporting people and doing work that the state has a responsibility to provide.

Are People With Disabilities Being Exploited?

As with most questions it depends on who you ask. Recently an article appeared in regional papers implying that non-profit agencies in NYS were doing just that, exploiting people with disabilities by paying sub-minimum wages in vocational rehabilitation programs. In addition, the article tried to tie the salaries of the agencies' executive directors to the issue. Now this issue has been raised in the past, most recently on the national level with a story about Goodwill Industries. In addition, Congress has been looking at reforms to not only vocational rehabilitation but to the much larger issue of supports and community based services to people with disabilities. It should also be noted that people with disabilities, government agencies and providers of services have been working together to try to find solutions to these issues for some time and no surprise. problems as well as solutions all seem to revolve around money.

Right or wrong, our society and culture has always placed a high value on work. People who don't work are seen as less valued, drains on society, bums, welfare cheats, etc. Work has often been cited as a tool used to rehabilitate people in our society, from prisoners to people held in institutional settings for the mentally ill and developmentally disabled. It's a long and somewhat shady history. In many cases it had its basis in religious teachings from the Puritan culture. I recently read an article about an Austrian immigrant in the early 1900 who was placed at what was once Willard Psychiatric Center. Over the years he dug 1500 numbered graves by hand for individuals who passed away at the institution. All of this was justified as part of his 'rehabilitation'. In very recent history, up through the 80's, people in institutions for the developmentally disabled performed work tasks and manual labor without pay or with small subsidies. Prisoners today are still paid pennies per hour as part of their 'rehabilitation'. Recently people in local communities have attempted to keep a number of prisons open using the justification that municipalities and non profits got 'free labor' from the inmates. All of this relates to the history of how rehabilitation has been viewed.

In the 1930's people began to develop centers for people with disabilities that trained people in work expieriences using real work. These programs expanded greatly during and after World War ll in response to the large number of returning disabled veterans. They were later expanded to include other populations. The Fair Labor Standards Act included a section that recognized the concept of using contract work and allowed people to be paid at below minimum wage. Their wage was based on the percentage of their productivity using accepted methods and time studies. That legislation has been criticized and updated over the years and is currently under review.

The problem with the recent article is that it is blame based and offers few if any real solutions. There are people in our society who have serious and challenging disabilities. Some of them, not all, want very much to work in a very traditional sense. States, NYS included, have come up with processes and regulations relative to how all of this should happen. States and the federal government fund vocational training and rehabilitation and the model is one that uses real work, through contracts with private industry and government, that allows people to be paid in the process. The ultimate goal is competitive employment. In other words, the person with the disability working side by side with a non disabled employee making minimally the same wage as their co-worker. Sounds easy. Let's do it. Then no need for articles about people with disabilities being exploited. But I think we all know its not that easy. We currently are graduating students from college who can't find work. What about access to the workplace? Are work sites accessible to people with disabilities? Then there's the economic challenge. Are private employers prepared to pay minimum wage or above to people who may in fact have serious challenges to their productivity? If the answer to all of these things is a resounding yes, then lets get started. There are many people to be hired right now and any rehabilitation agency will assist in that process.

My point is that there are a number of problems related to all of these issues. That doesn't mean though that we shouldn't be trying to find solutions. Some solutions revolve around funding and economics. If people think or expect that rehabilitation agencies should be the only employer of people with disabilities and therefore pay everyone minimum wage or better, then they will need additional employment subsides. Another solution is making sure people with disabilities are really doing the things they want to do with their lives and that may not include work. Hmm - how do we fund the things people really want to do - living in a community with all of the necessary supports? Another solution to a problem pointed out in the referenced article is that enforcement should be enhanced. It should be more than complaint based and yes there should be more personnel from the US Department of Labor assigned to this task (sorry folks, more money). Another solution is to look at a well thought out, planned reduction in any States' use of sheltered employment. NYS has been attempting to do that but the plan still needs lots of work with input from the people impacted, people with disabilities, their families and the people responsible for providing the supports. The danger is that some solutions could just shift people and funding from one program or support model to another. Some of that's happened already. As an example - Let's not have people work where they get paid. Let's have them volunteer where in effect they do real work for no pay. We need to be very careful with solutions like that.

The salaries of CEO's or executive directors may grab attention but they aren't really a part of the solution. Most of these executives are responsible for much more then one program. In addition if you do the math, reducing these salaries to create minimum wage or above jobs create few in relation to the number of people with disabilities these organizations are already supporting.

At the end of the day, it is human nature for people to feel their life has a purpose, to feel valued and to help others. When this doesn't happen, for whatever reason or set of reasons, what is government's role in helping to make it happen and are we prepared to pay the cost?

Caregivers Deserve A Living Wage and More

I like many others have watched the NYS Budget process and at the same time followed the national debate on raising the Federal minimum wage. I've also read about the rumblings from liberals and progressives in NYS relative to their disappointment with Gov. Andrew Cuomo on economic issues. All of these things make me think about policy decisions that have kept people and organizations from experiencing the economic growth that everyone touts as critical.

It's always interesting after budget negotiations to see announcements by both the Gov. and the Legislature dribble out about new money for this or that new project. No one seems to be aware of these items as negotiations are being held behind closed doors but when the budget is announced the news and at least promises of money start flowing. That's what happens in a non transparent process. Deals are made and certain constituencies' requests are met. But the worst part is that others' aren't.

The specific constituency I'm talking about are the caregivers and direct support workers who provide, care, support, relationships and so much more to NYS's vulnerable populations. Again, specifically, I'm talking about those employees in the non profit, private sector. Vulnerable people are the elderly and people with physical, intellectual and developmental disabilities. They live throughout NYS. Sometimes but not often enough, these people live in their own homes. They also live in approved residential settings or larger facilities like nursing homes and sometimes at home with family members. There are in fact a lot of options. The one consistent issue though is people who support them.

I and others have written about the employees who provide support to these people before. The reason is simple. Their dilemma is great and ongoing. In many cases these hard working folks are paid $7.50 to $8.00/hour based on the kind of reimbursement that organizations who hire them get paid. The high end of starting wages for these workers is $12 to $15/hr.

The other day I saw information from an advocacy agency saying something like "good news for direct support workers". This was referencing a 2% increase for these employees in this year's NYS budget. To put things in context, there haven't been increases for these positions in four or more years. Given inflation, these organizations and employees should have received somewhere around an 8% increase. How can organizations who are advocating for these people and the people they support be celebrating this good news? I also saw an article where a NYS Assemblyman was indicating that this 2% increase would help stop abuse as well as help control turnover. Really! I'd like to understand how that will work.

In the late 70's when institutions were still the places where the majority of people with intellectual and development disabilities resided, NYS made a deal with the public employee unions to not equalize the pay of those employees and non profit, private sector employees. That deal has driven the pay inequality for decades. A system was built on that inequality and continues to exist today. To fix it would cost millions. Yes, the millions that are spent on pet projects every year. The millions to revitlize athletic stadiums or to bring movies and TV shows to NY. There are so many millions it's hard to fathom and yet it becomes a battle to get a 2% increase for hard working people over four years. So high turnover, some abuse and mistreatment, will continue as people and organizations try to provide support to our most vulnerable citizens. Voices of advocates just aren't there or are ineffective.

Constant Vigilance

On Sunday March 9, 2014, the New York Times published an article titled "The Boys In The Bunkhouse". It is a horrific story of men with intellectual and developmental disabilities who were abused and exploited working on a turkey farm and processing plant in Atalissa, Iowa. These men had been through state systems set up to support and protect people with intellectual disabilities in Texas. The story can be read and seen here. As I said, it's horrific what occurred to these men but everyone should be aware of it and understand how systems fail people all the time. So read it and pass it on to others. It's critically important that people understand how systems sometimes fall apart.

Reading this story what strikes me the most is the need for constant vigilance, especially where vulnerable people are concerned - people with disabilities, the frail elderly, children, the poor and disadvantaged. You see, our world doesn't lack people who will take advantage and abuse vulnerable people. It's a sad but true fact. Someone always slips through no matter how much checking is done.

The other thing that strikes me is that we need to recognize and understand that vulnerable people are vulnerable. Changing their location, their program or the people who support them doesn't change their vulnerability. Most of the men from the bunkhouse live today in nursing homes, all of which are regulated. How safe are they now? Safer then they were, I'm sure, but bad situations can happen in nursing homes or anywhere else. We must be vigilant and we must recognize vulnerability.

In New York State we have seen our share of abuses. Willowbrook as an institutional name has gone down into history as a symbol of change. The system of supports for people with intellectual disabilities in NYS has become more community based as a result. That hasn't come without other abuses. Systems have become spread out and accountability sometimes has been lacking. But the type of support, in the community, has been wonderful for thousands of people and families.

In a quest to save money, systems continue to change. Managed care for long term supports is planned and toyed with. I don't happen to believe this is the right approach. Living in a home in a community is very different from a physical health issue that needs treatment in a health care setting. Community supports are being opened to a larger base of providers and family members themselves or even to individuals that are being hired by people who need support. Be vigilant. Saving money and responding to problems with more regulations is the way many governments operate. Is any of this really in the best interest of people who need support. Be vigilant.

The fact of the matter is that the good usually does outweigh the bad but when the bad happens, it tends to be really bad. All of us need to know how to identify the difference and how to maintain all of the good that takes place everyday. Reactive policies are usually the result of someone's  need to cover their rear end, reputation, job or reelection. But there are heroes everyday, supporting people, identifying better ways to support people and managing systems that sometimes defy management. Being vigilant and recognizing that some people are more vulnerable then others is a big job and requires all of us. Read 'The Boys In The Bunkhouse' and you'll realize how big the job really is.

Both Sides Are Wrong - Again!

In March of 2012 I posted a piece about a controversy in the Town of Middlesex, NY concerning the placement of sex offenders with developmental disabilities in a group home setting. The full post can be seen here.

Well the issue has come up again, with a vengeance. It seems the Office for People with Developmental Disabilities went forward with more placements of individuals listed as sex offenders in a number of towns and villages in the western NY area as a continued part of the closure of the Monroe Developmental Center. Here's a news report on the latest situation and protest in West Seneca, NY - click here.

Now remember, the first placements occurred in March of 2012 in Middlesex, NY. Although I've linked my entire post above, here is how I ended the article:

"So there is a dilemma for NYS - here they are trying to close a few institutions across the state where a fairly small number of these people reside. Questions need to be asked. If these individuals weren't in these institutions now, where would they be? Probably in the criminal justice system or unsupervised in the community I would guess. Now I'm a strong believer in the fact that no one benefits from an institutional setting. But how should these folks be dealt with? Where should they live? What supports do they need?

Here's my opinion for what it's worth. NYS should convene a set of experts, providers and community leaders, including elected officials and municipal leaders, to develop the plan that's needed for this population and for these closures. Plans are not going to be the same for every person or every community. It's going to take shared resources. Communities where placement and supports occur are going to need to have supports in place and this is going to take resources and communication. None of it will take place with finger pointing or blaming or position taking about who's right and who's wrong. It won't help for people to paint pictures of monsters either.

As I said early on, this really is an example of both sides being wrong. Hopefully some lessons have been learned and both sides will be a little more respectful of each other."

I know the Office for People With Developmental Disabilities was aware of these comments as were various statewide advocacy and provider organizations. It's sad that it seems no one listened, followed or considered any of these recommendations. Instead, the Governor's budget has and continues to include the reduction of behavioral health supports in local communities. In the end all of the communities involved as well as the people placed in these homes have suffered. Certainly the issue is difficult and complicated, but unless it's talked about openly and planned for appropriately there will be more harmful consequences down the road.

Words and Insults

Warning - I'm going to use some words here that I know are offensive to some people. I assure you though that they are used in the spirit of learning and teaching and with no malice.

Just the other day, an important labor leader in New York State used some words to insult and call out Governor Andrew Cuomo. The words were tough, insulting, a bit juvenile and disrespectful. Not to the Governor. He's a big boy and I'm sure these words like lots of others that have been tossed around at him and about him, rolled off pretty easily. First the words, a "monkey" and a "moron". An interesting use of terms by an intellegent person in an important leadership position. Here's an article describing the event and the language: Albany Times Union Article

The people who were insulted and disrespected were the many thousands of people who have intellectual and other developmental disabilities. These individuals have been fighting for many years to get people to stop using offensive language like "retard" and "mental retardation". Their reasoning? These words really hurt when they are directed at you, especially when you had nothing to do with your disability or there's not much you can do about it. As stated above, I'm using the word "retard" and "moron" to make a point. I could refer to the r-word or the m-word but some people wouldn't get it.

Now there are always those who say this is just political correctness. "Yup, another group of people that doesn't want to be offended." If that's your view, so be it. I probably won't change it. But for those of you who are trying to understand, it's really quite simple. There are words that have evolved in our society to the point where they become slang and sometimes people forget or don't think about their true meaning. Take a minute to look up either of these words. You'll find that they are identified immediately as offensive. But here's a different test. Look someone you know in your community who has an intellectual or developmental disability in the eye and call them a "retard" or a "moron". Please don't, but think about it. Think about the reaction you would get from them or the people around them. This is hurtful language and is meant to offend.

I've heard people say in a truly wondering way, "Well what should I call them?" My response is always the same. Let's start with a name or a person with a disability. Build a relationship. Get to know an individual and you'll know what to call him or her.

But there's something more basic about the comments that were made by the labor leader. This person is representing people who support people with developmental disabilities throughout New York State and he's using insulting language about the people supported. Why? Because he's mad at the Governor. Because it makes him feel good to call him names. Because he's trying to get his people worked up. But calling names and trying to be as insulting as possible doesn't solve the problem. Talking to people, building coalitions around common themes and issues, figuring out how to speak for more people then your basic membership are all things that could help in the long run. Get on board with understanding that institutional care is not something people want or need. Walk arm in arm with the people supported by these services. Walk arm in arm with the non profits who are hurting more and more everyday because of cuts. Step up in anyway you can, but don't fall into the old trap of using insulting and hurtful language.

Bad Government Policy Doesn't Require Party Affiliation

This shouldn't be any surprise to people, but bad policy comes from every political corner. If you're an ideologue this is harder to accept. Liberal or conservative positions are always right - right? No. The reality is that nothing is that concrete, infallible, infinite or whatever other word you want to use. Issues and people are much more complex then that.

In New York State we have a Democratic Governor who has been touted as a liberal, a progressive, a nouveau mix of compassionate liberal/conservative and so on. He is also, whether he admits it or not, interested in the 2016 Presidential nomination. That interest, in the muddled water of national politics, requires positions that appeal to many different forces and factions.

The mood of the average taxpayer makes it imperative to cut taxes, which in turn means cutting expenses and reducing services. Very seldom is the revenue side of anything viewed as a major part of the equation. It is less seldom that the human impact of policy decisions are measured carefully once the public relations aspect of a policy move kicks in.

A great example of all of this right now revolves around mental health and what some refer to as behavioral health issues. What's interesting, is that these issues and decisions have both national and local impacts. The Governor, in an effort to reduce expenses, has proposed the closure of a substantial number of psychiatric centers and developmental centers across the state of NY. From a number of progressive or liberal positions, that seems initially great. People shouldn't have to endure institutional care in any form. It's dehumanizing and ineffective. It's also expensive, so cuts will certainly please the more conservative among us. Seems like a win/win. But it's not. You see, this is where bad policy can come from - making decisions that will supposedly please all sides and ultimately doing it for your own benefit.

One of the problems we have is that mental health is, as it should be, in the forefront of very serious discussions about violence in this country. In that discussion there is and can be a lot of misinformation, confusion and jumping to conclusions, an example being that all people with mental illness can be or are violent. Or that people with intellectual or developmental disabilities are mentally ill and therefore could be violent. Or that those people can't have a mental illness in addition. There are scores of things that need to be sorted out in these discussions and there are some very responsible media reports dealing with these issues. There are also irresponsible and inaccurate reports.

As institutional settings are eliminated, the very real need for and where a discussion should take place, is about what community supports will replace those institutional settings. In addition, it should be recognized right off the bat, that 'community supports' includes the state's responsibility for continued involvement. Otherwise we have the ultimate bad government policy of just shifting responsibility from one place to another.

Community supports for people in behavioral crisis are absolutely necessary and their existence in NYS today varies widely. Ask hospital administrators, emergency room doctors or social service agencies if they are prepared to deal with people in crises in local communities today. Ask sheriffs or other police agencies if they deal with these crises and if they feel they are prepared. In many cases, you'll find that our jails have become the new institutional setting for people with mental health issues. And what about the person with Asperger's Syndrome, Autism, Cerebral Palsy or Down Syndrome? Can they have a mental health problem in addition to that primary disability? Of course they can.

Shifting costs and shifting responsibilities without proper planning or supports is the height of irresponsibility and has the potential of leading to real human tragedy. Clearly Democrats as well as Republicans can make bad public policy. But another question remains. Where are the advocates - self advocates, family member advocates, non-profit advocates, etc.? Where are the people saying hold on, let's do this the right way. Let's plan and combine resources and supports. In the end people with mental health issues and communities will suffer and a tragedy will have to happen to get our attention once again. Bad government policy has no party affiliation.

NYS Set To Restore Support for People With Disabilities

This is an interesting and great development. NYS is supposedly set to vote next week (6-21-13) to restore $90 million that was cut from the state budget to support people with developmental disabilities. The original cut was the direct result of a funding mechanism that the state used for many years to inflate its reimbursement from the federal government. Gov. Cuomo however, tried to blame the cut on non-profit agency administrators. Well that blame game has gone under the bridge with all the water.

Here are a couple of things that I find interesting. Instead of emphasis on the restoration and what it means, the thread that runs through all the articles that I've seen, seems to be about how the Governor worked this solution through to a positive end result by involving and working with various stakeholders. Some would say that's just politics and you have to give the devil his due. I view it differently. There are lessons to be learned here.

First, everyone should be cautious about this 'negotiated settlement' there are details that aren't too clear and that require other dollars being made up through one of those neat new words - 'efficiencies'. We'll see what all of that means.

But there's another aspect to these political statements. They're just not true. Let's be clear. It wasn't the Governor and the large statewide agencies that made this restoration happen. Sure they all want to take credit. They should take credit for what they did - namely put families, people and organizations through a living hell over the past couple of months. The people who can proudly take credit for this restoration, for this change of thinking on the part of the Governor, are family members, individuals with developmental disabilities and leaders of local organizations who helped rally people around this issue, sometimes at great risk. These real advocates made elected and appointed officials accountable and did it very publicly. These individuals embarrassed those in authority, those governing and made them feel foolish in front of the public in general. Again, it's a real lesson in activism. There are things that are outrageous and wrong. There are things that politicians can't be trusted with. There are things that require some risk in speaking up. I personally salute all of these folks - people with disabilities, their family members and supporters. You did it well. You did it right. But now be cautious. This battle is far from over.

Governing In NYS

I'm exhausted and should probably rethink posting this entry but we'll see how it goes. The reason for the exhaustion is that I pulled an all nighter watching the NYS Senate presenting and debating Bills that make up the NYS Budget. I've never watched the process before and was only able to this time because of live streaming over the internet. It looked like, according to the counter, that there were only about 80 of us online. I've tried to think of the best words to describe what I felt watching the process. Here are a few that come to mind - surprise, shock, anger, disgust, disappointment, amazed.

I was watching particularly to see the discussion, debate and action on the proposed $90million cut to supports for people with developmental disabilities. I had high hopes that after weeks, months really, of advocacy by individuals, families and non profit organizations the legislative body would minimally understand the issues related to these cuts, why they were occurring and the consequences. Boy was I surprised on that one.

I started watching the feed at about 8:15pm and finally went to bed at about 3:30am. I remembered how in my younger days I did things like that and how easy it seemed. It's certainly gotten harder. I found my mind wondering, caught myself dosing, thinking about alcohol, sugar and potato chips. I resisted all of those and refocused many times or tried to. The process and the legislators certainly didn't help. I really began to wonder how NY actually functions on a daily basis with this legislative process in place. First there's the mystery. Language like "set aside" or "the Bill is high" that all of these folks seemed to understand. They were in session for ten minutes, then "at ease" while the Finance Committee planned a meeting to act on Budget Bills.

Finally in full session, partisan debates and votes took place on various printed Bills that no one could have read. Democrats attacking the Leadership and the Democratic Governor for anything and everything. Republicans, sponsoring and defending the Bills, the Leadership and the Democratic Governor. Votes down party lines were the norm. No one jumped ship. Every once in awhile someone would express their concern about one thing or the other in a particular Bill but then they would vote with their party.

There are also drama kings and queens in this cast of characters and honestly they should all be forced to go home and watch themselves perform as part of their punishment. Juvenile chiding, back and forth reaching for high and low ground. All of the debate is supposed to go "through the President/Chair" and everyone seems to forget that at some point.

Somewhere around 2am the Aid to Localities Bill came to the floor. This Bill included the 4.5% cut to the Office for People With Developmental Disabilities which will be implemented against private, non profit providers only vs state operations. Many Senators on both sides of the aisle spoke about how horrible these cuts were but in the end the vote on the larger Bill was 51-9 affirming and including these cuts. The debate itself showed that very few of NY's Senators even understand the rationale for these cuts. The sponsors related the cuts to a Congressional Oversight Committee report on NY's Medicaid expenditures rather then the Center on Medicare and Medicaid Services decision and argument with NYS on overcharging the Federal government for many years. Some Senators went so far as to say that the $1.1billion payback to the feds was the direct result of private providers excessive executive compensation practices and these administrative cuts needed to take place. Sadly, they were not challenged on these false allegations. These Senators seemed to be mouthing the Governor's agenda. It was sad to watch.

So this group of statesmen and women are going to let individuals with developmental disabilities, their families and the people dedicating their lives to supporting them figure out how to move forward. At one point a Senator did ask the sponsor of the Bill what would happen to people if a group home was forced to close. The response was that no one expected closures. When pressed the sponsor indicated people would be served. When pressed again about how, he indicated that he didn't know.

So I'm tired - sick and tired of people who don't know what they're doing or why they're doing it. On to the NYS Assembly. They meet tomorrow. I'm going to sleep.

Andrew Cuomo Undoing Years of Progress!

It's a shame really. Governor Andrew Cuomo of New York is undoing years of progress for citizens with developmental disabilities. In the process, he's breaking promises made to these people, their families and providers who until now have been partners in building one of the largest systems of independent community support in the country. Like any large system it has had it's problems over the years but look at the alternative. Institutional care, custodial care that has a lurid history exemplified by Willowbrook. What's ironic and sad is that some of the promises he's breaking were made by his father, Mario Cuomo when he was Governor of New York State.

Cuomo and his team at the Division of Budget and the NYS Office for People With Developmental Disabilities have shown their true colors. They are certainly not progressives or advocates for one of the most vulnerable populations in NYS. They will tell you there just isn't an alternative. They will tell you their commitment to no new taxes or no tax increases is something we should all be proud of. They will tell you that the federal government is really to blame because it is disallowing a rate structure that was previously approved for many, many years. They won't tell you that NYS designed the rate structure and the over payments went into NYS's general fund.

Instead, they will sit back and defend a cut of 6% to voluntary, non profit agencies that assist the state in supporting 120,000 people with developmental disabilities in communities across NYS. Imagine being told that within 30 days you need to reduce your budget by 6%. They won't tell you that the agencies they're cutting are referred to as voluntary because they are doing this work voluntarily vs the mandate that NYS has from both legislation and the courts. They also won't tell you that they pay these voluntary agencies almost 50% less then the state spends itself to provide the same service. They won't tell you that they are dismantling a system that has been built on relationships with families and people with disabilities and good work, and that the system they're promoting is based on numbers and slots. They won't tell you a lot of things.

But the worst thing is, there is a meanness, and cold, cruel attitude to these cuts and to the Governor's attitude. This is pretty typical of this Governor. He has an edge to his response to questions and seems to want to present a "so what" attitude to anyone who questions or raises concerns about his actions or positions. He scares advocates and providers. He had his staff in the last week publicly call out and rebuke a state employee who spoke to the press. He is far from transparent. So now he travels to Florida to fundraise for his re-election or perhaps his election. The actions he's taking relative to people with developmental disabilities just go to show once more that he's no Hillary Clinton.

He uses an old trick when balancing the state budget on the backs of the most vulnerable people. He turns it around and tries to make it everyone else's job to find the money to support these people. "Where else should I cut?" he asks. That's your job Governor. You were elected to govern and to lead. Continue to travel across the state and handout your economic development grants. Fund museums and manufacturing plants and all of the things that will get you some votes.

I don't think the Governor really thought out these cuts and the impact they will have on the non-profit sector. I don't think there was a realization that some programs will in fact close and that many jobs will be lost. I don't think there was any thought given to how this will, in fact, slow down the closure of the remaining institutions in NYS. I also don't think there was any thought given to the relationship between providers and the state. People have struggled to develop a partnership over many years. You don't treat true partners this way.

So advocates be prepared to stand up to this Governor and his people. Be prepared for the cavalier glibness. The reality of advocacy is that you'll be pushed back, you'll be intimidated. As you get pushed remember this quote from Fredrick Douglas in 1857 -
 “If there is no struggle, there is no progress. Power concedes nothing without a demand. It never has and it never will.”

Who Can People With Developmental Disabilities In NYS Count On?

This post and the issues it deals with are very specific to the field I worked for many years, providing support to people with developmental disabilities. Last week, Gov. Andrew Cuomo and his Commissioner of the NYS Office for People with Developmental Disabilities, Courtney Burke, announced what amounts to a $240 million cut to private, non profit providers of supports, to one of the most vulnerable populations in NYS. That figure amounts to a 6% across the board cut to organizations who have sustained major cuts over the past 3 years.

All of this is due to a controversy that the state has been having with the federal government over a rate structure that allowed the state to receive $5000 per day for people residing in state institutions. Initially, the rate sounds deplorable and because few people have explained it, the figure stands out there looking awful. What isn't stated is that the rate was approved by the federal government many years ago. In addition, it was a known fact that NYS was using that rate, meant for institutional care, to help pay for the development of community and more individualized supports - the goal of the federal government. There has been tremendous scrutiny by Congress over this issue, especially in the highly charged environment of federal spending criticisms by various House Committees. 

NYS's Office for People with Developmental Disabilities share of the cuts totals $120 million but when you add the federal share it totals $240 million. The entire amount of these cuts will be to the non profit providers even though the state provides similar services. That's the 6% cut and it needs to go into effect by April 1, 2013. This is not only devastating, it's stupid and irresponsible. As Eriskine Bowles has pointed out relative to federal Sequester across the board cuts - no private business does across the board cuts. You don't take a meat cleaver approach to serious fiscal problems. Your cuts and adjustments need to be precise and effective. These cuts by the way, are coming at the same time that states may be faced with additional cuts forced by the Sequester mentioned above.

At the same time, providers are being asked to do much more relative to government expectations. Organizations are burdened and overwhelmed by regulations that in most cases have been put into place as over reactions to the state's own incompetence in operating supports for people with developmental disabilities. These cuts will have an impact on quality of supports, an economic impact relative to job reductions and much more.

The state then has the gall to ask private providers to stand with them in a partnership to develop more homes in the community while institutions are closed and to come to conferences on visioning and planning. Hopefully the field will be smart enough to boycott these requests and to let the state know that it has shown its true colors in not supporting people with developmental disabilities. Its a shameful action by NYS. Families, providers and people supported legitimately need to ask - who can we count on?

Another Perspective To Criticisms About Supports To People With Developmental Disabilities In NYS

A while ago there was an editorial in the Albany Times Union that was critical of organizations providing support to people with developmental disabilities based on an article in the New York Times. Both the editorial and the Times made some assumptions based on information that had been researched through a review of statistics and incidents. There has mainly been silence relative to these articles from the field of people who provide these supports. Recently there was a response in the form of an electronic comment to the editorial. I am respecting the anonymity of the author because it was posted that way. I have posted previously about anonymity and have my opinions on it as stated. I do think this is an important comment from someone who obviously understands the current state of affairs. Here it is:

"We live in a world of self-generating beliefs that remain largely untested. “Climbing the ladder of inference” is the process by which we establish meaning of something based a few observations without testing the accuracy of our beliefs or assumptions. This appears to have happen with the NY Times article and then the Times Union editorial. The Times Union editorial concludes the NY State system is an “overpriced disgrace”. Really? First, looking closely at where the $ are spent, one discovers that the non-profit agencies cost- averages fall within the mid-range of costs of like services nationally. The cost outliners are the state developmental centers. Two, the NY Times article says “And the state has no uniform training for the nearly 100,000 workers at thousands of state and privately run homes and institutions”. Again,what are the facts. OPWDD regulations require training in abuse and neglect (a standardized curriculum) typically 3 days in length, Medication Administration (a standardized curriculum) typically 4-5 days in length, first aid and CPR (a standardized curriculum, fire safety, and on and on. In addition, many non-profits train their employees in a variety of other topics or tap in the on-line training program called the College of Direct Support. And in terms of the “lack of oversight”, all the regulations (which there are many – just check out the following website:http://www.opwdd.ny.gov/regs/index.jsp) need to be followed in order to maintain OPWDD certification. Non-profits are audited throughout the year (yes, throughout the year) against these requirements. The NY Times suggests that OPWDD should have sent out “choking” warnings.

They did, twice, once in 1999 and then in 2007. Check out this site:
http://www.opwdd.ny.gov/hp_guidance_documents.jsp. In terms of incident management, there is a guidance document of over 330 pages, which is the bible of incident management, check out this site:http://www.opwdd.ny.gov/wt/manuals/part624/incident_management.jsp.
In terms of financial oversight, each non-profit has to submit to OPWDD a 150+page consolidated fiscal report, which has very tight guidelines in terms of allowable costs and where funds can be spent.

In terms of quality and scope, NY State is 2nd to none. The OPWDD collective system serves close to 100,000 people, many in 24 hour care and many over a life time. Visit any non-profit agency in your community and you will hear inspirational stories. Many of them are about how people with developmental disabilities are supported in the last stages of life, in their homes with friends and family. Also, check out OPWDD’s report on National Core Indicators (focused on quality care). NY State gets high marks on nearly every indicator. These results are generated from interviews with family and individuals receiving services.

In such a large complex system, are there breakdowns, slippage,human error, and at times crimes – you bet. Can we find any human system absent of these unfortunate aspects? Can we improve, of course. Should we assertively deal with trouble areas, of course.

So what is going on with the NY Times article and the Times Union editorial. One possibility is that the ladder of inference process is fully functioning here. Take a few tragic situations, and a few more situations involving abuse and possible criminal behavior and attribute it to the whole system without testing your assumptions."