Only Anecdotal

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.