Only Anecdotal

The stories that make the numbers

Archive for the ‘assistance’ Category

Day 7

with one comment

Today’s post finds me in my dining room, huddled around a space heater. I am home from work today, finally having fallen sick after my normally toasty warm abode has transformed since last Friday into a veritable icebox of a home.

I do consider myself lucky, however, as we are no longer in the dire straits we were when the heating system was installed in 2009. Like many post-divorce families, we moved from a comfortable upper middle-class existence to a situation that flirted dangerously close to the national poverty levels.

The fact that we had fallen so low, however, made us ironically better off in many ways, due to eligibility for several programs and grants for low-income families. My children were free lunch kids, then reduced-fee lunch kids once I found a job. This lunch assistance, I quickly learned, put us into a category to receive all sorts of perks that were totally out of reach to anyone earning even a barely-livable wage. For example, we avoided the $270-per-child school bus fee once the kids hit sixth grade, and we were offered opportunities to attend summer camps that even at our formerly comfortable, grandparent-subsidized income could have been able to afford.

We were lucky to have these opportunities, but it was also unfair, particularly to families who were just over the income limits. Because the lunch assistance is based on federal poverty levels, it is easy to struggle in Massachusetts at a much higher income than these programs allow. I continue to find it difficult to reconcile that there is such a line where people can qualify for considerable assistance, but they lose nearly everything once they begin to earn enough to sleep at night. Insomnia quickly returns when a family can suddenly lose everything from fuel assistance and fee waivers to housing itself, simply because of a very small increase in income. The jump required to be self-sufficient is such a grand leap that it is no wonder so many people never manage to climb out of hardship.

Not to sugar-coat the application process for financial benefits, it was humiliating. I remember waiting in line for food stamps a few days after my husband moved out of our house. The man assisting me asked if my husband liked to “rough me up.”  As he collected the paperwork to reveal pertinent details of our financial situation, he told me that I should get a nicer haircut and smile more, as if either were quite possible at the time. We received emergency funding that very day, though, so the questionable legality of his comments was hardly something that I wanted to challenge at the time. I immediately went to the grocery store and bought my family food, crying in the checkout line as I realized that my new EBT card was really going to cover our bill. I shook myself off, and sent regular proof of my continued shame, as requested, until I could no longer stand it. It never got easier for me to ask for help, and I never forgot that feeling. Still, to this day, I would be happy to sit in a SNAP benefits line with anyone else facing the same humiliation that should not be.

Over the years following that initial application, however, we received a great deal of help to improve our lives both short- and long-term, and I am grateful. I was also lucky to have grown up in a family with a highly educated, erudite stay-at-home mom and a high-school-educated, blue-collar, union-member dad during a time that this was a near-guarantee of middle class. (More on this in a future post…). I went to college, and went on to earn graduate degrees. I have uncounted advantages that made it much easier for me to network to find help and navigate the rules and paperwork required.

I also learned that many people want to help, and have ideas of how they can do it. I learned, later, as I worked with others seeking various forms of assistance, that help comes mostly not as it is really needed, though, as an official, obvious, mandated policy. Sure, some assistance is mandated, but much of it is also unfunded, or under-funded.  Some assistance has legislated drips of funding that may easily be squeezed dry in the next year’s budget. Eligibility tests may become all the more stringent in the process, leaving many people in difficulty. Often, great ideas are tested in pilot programs that may or may not continue. Same for grant-funded projects. And then, there is charity, less predictable, sometimes hidden, often wonderful.

Now, over ten years past my food stamp days, my children are now (at least officially) adults, and I manage. The heating system was installed in February 2009, a gift, as I understood it, from the then-Town of Framingham, with the agreement that our energy use could be monitored for some sort of study. A company called Climate Energy removed our old furnace, and installed in its place the innovative Freewatt system. The system included a high-efficiency furnace that was connected to a generator. The generator, a Honda motor, then produced electricity, which we sold back to NStar. The credits were applied to our electricity bill, and our energy bills for both gas and electric dropped dramatically for all the years that the system worked. Some winter months, we paid $10 for electricity, and our house stayed toasty warm. It was such a relief!

Climate Energy also received alerts whenever our system was not functioning properly, and within days–or hours, even–a technician appeared at our house to repair equipment. Every year, they called to schedule the yearly maintenance.

In 2014, though, I took off work for the yearly service day, and instead received a visit from a woman offering to buy back the Honda generator. She told me that the system was no longer being offered in the US, but that maintenance would still be provided until the end of the warranty, after which I would have to pay for service, including an oil change. I kept the generator, and planned for service, anticipating the continued reduction in my electric bill.

A year later, no one called for regular maintenance on the furnace. Climate Energy had warned us when the furnace was installed that the equipment required training and experience to maintain, so I called the company myself to schedule service. I was so spoiled in the past by the company’s proactive management, but I knew it, and never wanted to neglect the maintenance.

Climate Energy was a part of another company called Yankee Scientific, so when the phone rang to their number, I was not surprised. I left a message, then another, then emailed the contacts I had had with the company in the past. I never got a response from anyone, and began the search for another experienced installer. A year later, I had no success, and kept trying, poring over the paperwork I had–I kept everything! I probably should have had someone–anyone–come in to service the furnace, at least. But I didn’t. I was afraid to wreck it, and may have wrecked it anyway in my neglect. Maybe the blower would not have failed with maintenance, but maybe it just wore out.

If you search for Freewatt now, you will find the http://www.freewatt.com website, which directs you to the dreaded site of nothingness. Reviews and videos touting the efficiency of the Freewatt system date back years, and some former installers now seem to offer solar panels instead. I did reach a man who had installed a few systems, but he told me that he had also ripped those same systems out after he received no support from the manufacturer.

A kind man in the now-City of Framingham tried in vain to find records to help us, but the social worker who had originally contacted us had left her position years ago, and her department of social services was apparently eliminated.

Now, despite the current breakdown, I am grateful to have had a great furnace for nine years. We called a large company for repairs, and will restore the furnace, if not the generator, even with a cold wait for the parts. The cost of this repair, however, is not small. I am not sure what might have become of the other households included in the study. I sent out a message to a neighborhood group to find someone with a similar experience, but no one answered. How do low-income households who depend on support manage when assistance so abruptly vanishes? The cost of the repair could easily send a struggling family into a downward spiral financially–clearly not the goal of the original program, but a problem for so many good intentions.

I think now of sustainability and charity, and how intended kindnesses may backfire when the funding runs dry. As we look toward the end of the year, and our wishes to be generous in the spirit of the season, we must also aim for compassion. Receiving generosity does require effort, too, as those in need balance humility and gratitude with self-respect and a desire to give back. We must always consider that when we offer help, or accept it, we develop a relationship. It is a connection that can give hope, but when we do it right, it also allows us all to open our hearts and accept our human condition together. It may be anonymous, and sometimes these are the greatest kindnesses, but only when we accept that the gift never stops with the immediate gesture. As I think back to the ways we struggled in a time of change, I know how easy it is for anyone to end up needing help for any number of reasons. I also know that a lasting difference will consider the future at the outset. A lasting difference will always bring people into the fold with empowerment, choice, growth, and dignity.

 

 

 

Written by Only Anecdotal

8 Dec 2018 at 9:11am

Posted in advocacy, assistance, community

Tagged with ,

Reminders

with one comment

Today was the first pickup day at Stearns Farm. I had completely forgotten how I had grown to love garlic scapes last year, but there they were, reminding me of how glorious they are!

Stearns Farm is a beautiful CSA in northern Framingham. I first knew of the farm from the mother of one of my daughter’s preschool friends, way back when. These friends lived on a nearby street, and told me all about the lovely flowers available there. I drove by several times, and then saw the opportunity to work for a share. It was the perfect opportunity for my son at the time, and I quickly fell in love with the community there. We joined as paying members last year, and bought in early this year.

Now, the vegetables and herbs and flowers and occasional berries are a highlight of my week. But even more precious to me are the gems of moments that have often caught me off guard. Last year, I recognized an old neighbor. I loved chatting with people: people working, people picking out their weekly share. And today, a woman called out to me, by name. She knew me, and reminded me of how we met.

I was working at the time as Options Counselor, in the position that originally inspired the creation of this blog. The woman told me that I had visited her aunt–it must have been over five years ago. Somehow, she knew my name, and remembered what I had said, and I remembered her face, and her kindness. I also remembered her aunt–who is doing well now, I am happy to say.

I do miss that work. I miss the job at the Consulate, too. I miss working (“working”) where I can not only interact with people, but where I can actually make a difference in their lives. It sounds trite. But I thrive where I can work through bureaucratic details in systems that in all their stupid awkwardness really are designed to make life better for people–as hard as they make it for anyone to figure out how. Figuring out how is my forté.  Most of all, I miss hearing people’s stories, and understanding what they need to fulfill their dreams, or just to live a beautifully ordinary sort of life. It was creative work, or I could think of it in creative ways as I cleared the brush and wove a way through the labyrinthine rules and structures of resources. When I felt an injustice could be remedied, I wrote about it–often, here–or I spoke about it, publicly. I always felt that naming a right makes it real: and something real to fight for. I felt honored by the trust and love in our communities, the individual people who both needed help and wanted to give it.

It is easy to wax poetic about work in the disability field, and the privilege to be paid for good work, with others working for human rights. When there were not enough resources for the many individuals I met, though, it was very hard to stay upbeat. When I could not manage financially for my family on the income I earned, it was even harder. The lack of possibilities to earn a sustainable iliving is exactly what made me leave that work.

So, I left. But every so often, in a grocery store, in the library, at Stearns Farm, I run into someone who knew me then, and I am reminded that there is a bigger world that loves beyond the greed and horrors we see so often in our society now. I am inspired to work toward this love, to love more, and to find a way to survive while doing it.

I write now to return to this generosity, to fuel it, and to remind myself that it is the most important thing I can do in my life right now.

 

Written by Only Anecdotal

19 Jun 2018 at 6:00pm

A Day In the Life

leave a comment »

It is time that beats in the breast and it is time
That batters against the mind, silent and proud,
The mind that knows it is destroyed by time.

 
(Wallace Stevens (1879-1955), U.S. poet. “The Pure Good of Theory.”)

The winter is made and you have to bear it,
The winter web, the winter woven, wind and wind,
For all the thoughts of summer that go with it
In the mind, pupa of straw, moppet of rags….

 
(Wallace Stevens (1879-1955), U.S. poet. “The Dwarf.”)    

A day in the life…

            It is Monday, and I head off to a neighboring town and check the address again. It is a public housing unit, with its own unique way of numbering homes, but at last I find the right building. Apartment B is at the top of a well-worn stairway smelling of stale smoke. A fan blows in the corridor, and a disassembled table and a beautiful throw rug sit on the landing. Wind chimes hang from the ceiling. This is home. I knock on the door.

            A man answers. His graying hair and drawn face suggest someone older—in fact, Mr. R. is in his late 40s—but chronic illnesses and depression have taken their toll. He smiles, and asks me if I like cats just as a black creature circles my legs. Music plays softly: bells, birds chirping in an electric soundscape, and Mr. R. has made green tea: I take the cup: accepting hospitality is the one kindness I can give to him now.

My consumer’s apartment is filled to the ceiling with trinkets, stained glass windows, boxes of tea bags, clothing, yoga mats. He means to clean up—the room is clean, actually, just cluttered—he apologizes, as he collapses into his armchair. The effort of all this has worn him down, and he remembers that he has forgotten to eat breakfast, as he does most days. He apologizes for this, too, and gets his shredded wheat with a banana. Then he tells me his story.

            The story is so often the same: difficult living conditions, inaccessible housing. But in this case it is not an architectural barrier that is in question. Mr. R. is not in a wheelchair, but has a chronic lung disease—one that killed his mother—that makes breathing a challenge. He has oxygen so he can sleep. The apartment is inaccessible to him partly because the woman who lives below him is addicted to cigarettes. Through these thin walls and interconnected heating system, incessant smoke permeates the entire living space. Mr. R’s exhaustion from fighting the situation has hardly been worthwhile: apartment management claims they can do nothing to help him, although Mr. R. confesses to me that he had a friend fill in some of the airspaces around plumbing with a foam spray. He duct taped the radiator. He blew his air conditioner throughout the winter to filter the air, and to control the heat settings his neighbor determined below—too high for him.

            Mr. R. is tired. He does not have the energy to organize the boxes and clothes in his apartment so that he could actually be comfortable in it. He came up close to the top of the list for Section 8 housing… but still is waiting. He might be next.

            He is poor now, he tells me, frustrated still at his inability to work. He is on MassHealth, has SSDI, but is barely getting by. A sister nearby has helped him a little, along with an ex-partner, who is here with him now. These two friends share an illness, but one has nearly recovered now. Mr. R’s friend knows a lot, and shares a new resource with me: Common Servings, a sort of meals-on-wheels program for all ages. As wonderful as it sounds, the agency operates in Boston and in communities north to south.. not out here. They will freeze a week’s worth of meals if they can be picked up, but who will do it?  It may be a good solution, though: home-delivered meals from the local elder agency are only available to people over 60 years of age.

            Medical appointments are a part of Mr. R’s life. He drives to them, but the drive leaves him exhausted. He is considering changing from one specialist he likes at MGH because of the expense involved in getting there. The parking alone costs $8 per day, and that is with a stamp from the doctor. Evidently, no one has ever mentioned that MassHealth can help with medical transportation costs: the consumer is thrilled to know about PT1s.

Mr. R’s ex-partner is working on the computer in the bedroom and overhears: he tells me that I am getting a very rosy picture of his friend’s situation. Mr. R. does not have the strength to shower on his own. He forgets to turn on his oxygen. He forgets to eat, or is too weak to make a meal. The list goes on. I am thinking personal care attendant. Again, though a MassHealth subscriber, he has never heard of the PCA program. He has not figured out food stamps. Grocery shopping, after all, takes a full day for him.

Mr. R. is intelligent, funny. He is also very sick. He has been approved for a pulmonary therapy program that may offer a partial medical solution to some of his discomfort. He likes his doctors, thinks they are helping. I wonder how much healthier he could be with a few non-medical changes.

Like moving. He doesn’t need anything fancy, he says: just a smoke-free environment (one that takes cats), and help getting his things there. He thinks he could contain the mess if someone could help him get his things organized, maybe once a week for a while. And what if someone could help him out a few hours a week, just to help him with his daily routine, his activities of daily living? His life and the struggle to meet his basic needs sound exhausting to me, and I do not have the health challenges he is facing. What if he could live with no smoke, a little less clutter, dependable meals, someone to help him just a little bit? It might not only make his life better: it might actually save his life. And he might not need the help forever.

I can think of at least one resource immediately, find out a bit more information, help link him with someone to help him advocate better. I know that that in theory there are some solutions available. In practice, some options may be harder to get than others. But there are options.

The real beauty of the long-term care options counseling job is the flexibility of creative thinking, a thinking of what can we find to meet a need, rather than a list of what can we offer. Several years ago I began a project for the Consortium for Children with Special Needs. The executive director wanted me to find the gaps in services for children, starting from a family’s needs, and looking for the ways in which they were met… or not met. An online survey yielded an enormous number of responses, many heartbreaking. In the end, the project was unfinished, and that director moved on. The biggest challenge was that there simply was no single point of entry, and the separate agencies and entities seemed to little about one another, either duplicating services or not filling them at all, and not cooperating very well in most cases to figure it all out.

A few models had been developed that did consider a “no wrong door” policy. Scan 360 in Springfield, for example, is a project that also works from this premise. The unfortunate part of this is that it is limited to families with a member who has a developmental disability. Utah Cares is an online portal that automatically signs people up for services and prompts a call from relevant agencies. Models exist, but they are not the norm.

I think of Olmstead—about to turn ten years old. Could long-term care options counseling be the model of the future? It exists in many states at this point, and has that similar goal of linking services, plus the benefit of a face, a name, a visit, a relationship. If there is one regret I have in this position, though, it is that only adults are eligible for it. At least for now.

I think again of Mr. R. He lives in a town that may have many small ways of helping him. I am fairly sure that the town’s Human Services department has volunteers who help with grocery shopping, at least for now. If not, grocery delivery is available and costs only an extra $6.95. Only.. they don’t take food stamps. I call to make sure. No, they do not do that now, a woman tells me, but they get a lot of requests. I ask her if she can relay a message to her supervisor. I ask her if she is aware that federal “Meals On Wheels” programs serve only elders—not people like Mr. R. who have disabilities and are homebound and hungry, too. She says that she will forward my message, and I feel a little ramped up, wondering if she really will.

I wonder, actually, if Mr. R. will get what he needs. The housing may take some time, but in his case he seems likely to get his Section 8 voucher soon. Home care may be harder. The program I know about has a wait list, if they are even adding to it at this point. I am not completely sure that Mr. R. will be found disabled enough to qualify for ten PCA hours per week, the minimum to have the program at all.

At the very least, Mr. R. is already connected with one non-profit agency, and he tells me more than I knew before about the services they provide and how they have helped him, how they have been hit by budget cuts, too. Other disability-specific organizations often have resources, grants. Creative picking through some other MassHealth programs, agency-based services, grants may yield some help. You never know until you look, and ask.

Asking can be hard to do, though. I imagine that in so many places where forms sit incomplete on kitchen tables, it is not the task of filling out paperwork that holds things up. There is a humility involved in asking for help, and it can be hard to swallow the need for help, especially in a culture that is so driven by the notion of independence.

I know what frightens some people, that feeling of driving down Mount Wayte Avenue and pulling into the former bowling alley that now houses the Juvenile Court on one side, the Department of Transitional Assistance offices on the other. It is shameful (or sad, anyway) to park, to go in and ask for food and shelter, to write your name at the end of a list, and to sit, with the others, on school chairs. At a certain point, you will see the signs on the walls: employment regulations, notices about unemployment benefits, how to know if you are being abused and where to call if you answer yes. Someone finally calls your name, and you may be surprised that they are nice… maybe they are too nice. Maybe they suggest other ways to get help. Or maybe they have silently decided that you are dressed too nicely to qualify for benefits. You have too much education. Get a job. They are surprised to find that you do qualify, and the hassling is subtle. They want more proof. No bruises? Not really abuse. No wheelchair? Not really a disability. And you really never thought you would be here, did you? Never thought that you would be sick enough to get to this point, or that this point could ever be possible. You had insurance, and poverty is not supposed to happen to people who plan for these things. Now, you have to stay poor to get help. The incentive is strong: earn a little, lose a lot. There is no such thing as building a nest egg in this world. Winning the lottery is about the only way out.

Parents of children with disabilities are often directed to a little piece called “Welcome to Holland”. Though intended for parents of children with Down Syndrome, the article may refer to any parent’s thwarted expectations as a child is found not to be “typical”. Parents expect Italy, the piece says, but end up in Holland. Holland is a lovely place, though, if different from Italy.

What the piece does not tell parents, however, is that Holland is an amazingly bureaucratic place. The postcards may be flouting those tulips, but getting them to grow in most places is a difficult thing.  

Written by Only Anecdotal

16 Sep 2009 at 10:16am