Your center is required to have a three year financial and program plan*, and you report on that in your annual Program Performance Report. It isn’t called a strategic plan in the requirements, and you have a lot of flexibility in how you develop and implement your plan. Let’s talk about some key aspects of YOUR organizational plan.
Your plan should be realistic. Your stakeholders — the board, staff, consumers, funders — want to know what you WILL do, not just what you think you might want to do someday. Decide on concrete actions you can take. Write them down, committing to a time line and who is responsible for the work. Then report at board and staff meetings what is actually happening, flowing from the plan.
Your planning process should fit the size and scope of the plan itself. There was a time when non-profits put big money into hiring a facilitator to help develop a written plan. Anyone remember retreats, at fancy conference hotels or rustic camps? These are seldom done any more, for reasons of cost, time, and the pandemic. You may plan over several ZOOM sessions, but they don’t all have to be over a weekend. You may want committees to start the work. There isn’t just one format for putting your ideas into a written plan. Do the work you need to do to focus on each goal.
The board’s role in planning may be different than you think. Sometimes the board of a non-profit is called a “planning board” or a “policy board” or is otherwise defined. The true bottom line, though, is that it is made up of individuals and each comes to the table with their own ideas, especially when it comes to planning. Give those individuals a chance to work on the goal that most resonates with them, especially if you are producing drafts by small groups before the whole thing come together.
Independent Living Philosophy must be prominent and dominant. Many written strategic plans start with a vision statement and a mission before the goals are identified. These are good — but you don’t have to re-write them year after year. The purpose of a center is clear in the Rehabilitation Act, and Independent Philosophy is woven into the very fabric of a center for independent living. This focus should not change, so your mission and vision may not change that much year to year.**
Planning and problem solving are two different processes. If problems become apparent while you are planning, the problem solving will need to happen in a different context. If the area of concern is a key one the planning may have to be suspended while the problem is solved, but you don’t necessarily want the planning team to “fix” the issue, especially if it involves personnel performance or financial support for the issue. The usual management structures should address those issues.
Remember this is a financial and program plan. Is financial sustainability a key part of your planning? A budget that “puts your money where you mouth is” must be in place for the program plan to be successful.
Focus on consumers — who are your consumers and what do they need your organization to do right now? Focus on the people and their real lives will keep your plan real.
*Title VII, Section 725 of the Rehabilitation Act, Assurances, states: 4) the applicant will establish clear priorities through an nual and 3-year program and financial planning objectives for the center, including overall goals or a mission for the center, a work plan for achieving the goals or mission, specific objectives, service priorities, and types of services to be provided, and a description that shall demonstrate how the proposed activities of the applicant are consistent with the most recent 3-year State plan…
**Sec. 725 REHABILITATION ACT OF 1973 184 (1) PHILOSOPHY.—The center shall promote and practice the independent living philosophy of— (A) consumer control of the center regarding decision-making, service delivery, management, and establishment of the policy and direction of the center; (B) self-help and self-advocacy; (C) development of peer relationships and peer role models; and (D) equal access for individuals with significant disabilities, within their communities, to all services, programs, activities, resources, and facilities, whether public or private and regardless of the funding source.
A strong, vibrant board of directors is a clear indicator of a healthy organization. Yet even the best organizations need a periodic check-up to ensure that they cannot just survive but will really thrive in today’s environment. To check your board’s vital signs, or to put in place practices and strategies for a healthy and energized board, the best place to start is with a board self-assessment.
Self-assessment and evaluation are worthwhile and critical components to ensure your board is functioning at its highest level and working to accomplish its mission. It may result in board training (an overlooked area) or some focus or action (review by-laws, create fundraising committee, research executive compensation etc.).
This past couple of years have been out-of-the-ordinary. Or maybe have presented us with a new normal (or most probably some of both). Either way, the board as well as the management of your center have had to navigate new policies, new funding, new partnerships, new human resources dilemmas.
Some of you have put the long range, visionary work of the board on hold while navigating this pandemic. This may include strategic planning, a topic we will address in a future post. There is a step before jumping back into planning, though, that I would like to suggest. That step is for the board to evaluate itself. Why? you might ask?
Ann Lehman, in a recent post on Blue Avocado gave these four reasons why your board should evaluate itself:
Peak Performance. Conducting a self-evaluation and assessment for the board is similar to evaluating the performance of a top executive: You start with a job description and conduct a periodic performance evaluation against that description.
Education. Developing the criteria for the board to evaluate itself also forces boards to think about what it is they are doing or should be doing now that the pandemic is receding. What are your board’s benchmarks for success?
As part of this, now is the time for all nonprofits to examine their relationship with racial, ethnic, and gender issues. Has the board been through an examination of its diversity practices? Has it examined its relationship with racial equity? Do the board members reflect the diversity of the community it serves?
What are the board’s responsibilities? What are the fiduciary, managerial, or fundraising roles? Do the agendas and meetings focus on important strategic and generative issues rather than mundane reports? Does fundraising capacity need to improve?
The process of developing questions and indicators for board evaluation helps the board identify its standards for top performance.
Energize and Build Your Team. We sometimes hear board members complain that they do too much listening and not enough participating in leading the organization. Developing and doing the self-evaluation and assessment process is an active step that often energizes the entire board.
Promoting honest conversations around these topics gets them out in the open without any hidden agendas. In these times of authentic discussion about racial equity, has the board done any self-examination? It helps build the board members’ trust and relationships with each other. For example, the board members’ lack of participation in fundraising efforts would be easier to discuss through this assessment model; if done in a constructive rather than a critical manner, it can move the dialogue forward on a broad range of issues.
Create a Roadmap. The assessment results will point to strengths, such as fiduciary or financial knowledge among board members or a dynamic committee structure that can become building blocks for new endeavors.
It will also help the board determine what needs further development or training (e.g., diversity, planning, fundraising, recruitment governance, all come to mind). Assessment helps with better recruitment and orientation in the future, as well as building self-assessment into an ongoing part of the boards process. All of these outcomes can help build the boards’ goals and objectives for the coming year, and you can set time aside at a retreat to discuss, train, or further develop operations.
It is worth noting that an evaluation at a time of crisis may not be appropriate, but if the situation has passed or at least is not at its peak, this would be an opportunity to start to address the issues raised. If you have just added or are about to add new members, an assessment can be an excellent introduction to what it means to be an influential board member today.
Self-assessment and evaluation are worthwhile and critical components to ensure your board is functioning at its highest level and working to accomplish its mission. It may result in board training (an overlooked area) or some focus or action (review by-laws, create fundraising committee, research executive compensation etc.).
After decreasing two years in a row, the rate by which taxpayers may compute their deductions for costs of using an automobile for business purposes will go up to 58.5 cents per mile for the 2022 tax year, an increase of 2.5 cents per mile over the 2021 rate.
Notice 2022-03, in which the IRS announced the update on Friday, also provides the standard mileage rate for use of an automobile for purposes of obtaining medical care under Sec. 213, which will be 18 cents per mile, up 2 cents from 2021. The rate for providing services to a charitable organization remains the same, set by statute at 14 cents per mile (Sec. 170(i)).
John F Heveron, Jr. Principal, Heveron and Company CPAs
In prior years when you paid $600 or more to individuals and unincorporated businesses for services, you were required to issue a form 1099MISC. That form still exists and must be used for certain payments, such as rents, royalties, and other income, but form 1099NEC generally replaces that form for services that are provided to your organization by nonemployees.
NEC stands for nonemployee compensation, and the form is required when you are making payments to an attorney and when you are making payments of $600 or more to an individual or unincorporated business, for services provided.
We often get questions about whether payments to clients or needy individuals are required to be reported on either of these forms. First, it is important to understand that IRS requires these forms so that they can do income matching. If income is reported on one of these forms, IRS will look for it on an individual or other tax return. So, payments that are not income are not required to, and should not be reported on either of these forms. For the same reason, other businesses are not required to issue 1099 forms to charities.
IRS publication 525 describes taxable and nontaxable payments and includes the following:
Gifts and Inheritances. In most cases, property received as a gift bequest or inheritance is not included your income.
IRS’ website also describes aid to individuals, stating that organizations may provide assistance in the form of funds, services or goods to ensure that victims have the basic necessities such as food, clothing, housing (including repairs), transportation and medical assistance.
These payments and services are unilateral or nonreciprocal transactions, because no services are being provided in return. So, no income reporting is required.
John F Heveron, Jr. Principal, Heveron and Company CPAs, Rochester NY
Working on your annual report? The article below has a link regarding modernizing the report and making it exciting, but it also addresses a key area of donor recognition – printing the names of donors. Be sure to take a look.
At a very minimum, of course, you want to thank your donors personally, either through a thank you note or letter or sometimes a phone call of appreciation. (That call doesn’t have to come from the CEO, but can come from staff, participants, or board members who are trained and capable.) These are people you will go back to someday, maybe soon, to ask for more, so you want to make sure they know you appreciate them. Make sure none fall through the cracks. Automatic monthly donations, if you are lucky enough to have them, can be missed and you really mustn’t. Maybe you will decide against thanking every time, but I advise you tread carefully. Those regular subscribers are your bread and butter.
I suggest a Thanksgiving letter to all your donors. (Time to plan for next year!) This is before the Christmas rush of requests for new donations, and lets them know at an appropriate season that you really appreciate them. When you can personalize the letter, even better.
Some donors, frankly, expect to be recognized more substantially. Other ways that donors are recognized: A gift, often a gift with the name of your organization. Sometimes the size of the gift is bigger with the bigger donation. The value of the gift is deducted from the donated amount for tax purposes. Pens to notepad notes to bumper stickers to certificates or medallions can serve this purpose. Note, though, that fund raising expenses are not allowable with your federal grants so these premiums and gifts aren’t allowed either. When the donation is significant, sometimes a room or a building is named after that donor. Sometimes there is a donor wall with the names of donors over a certain amount affixed to the wall in some way, from leaves on trees to bricks to small engraved plaques. And there is that list in your annual report. Take a new look at that — the article below is worth reading.
All centers are required to provide what are called in the Rehabilitation Act and the regulations in 45 CFR 1329 (definitions) “core services”. Those services are:
Independent living core services mean, for purposes of services that are supported under the ILS or CIL programs –
(1) Information and referral services;
(2) Independent Living skills training;
(3) Peer counseling, including cross-disability peer counseling;
(4) Individual and systems advocacy;
(5) Services that:
(i) Facilitate the transition of individuals with significant disabilities from nursing homes and other institutions to home and community-based residences, with the requisite supports and services. This process may include providing services and supports that a consumer identifies are needed to move that person from an institutional setting to community based setting, including systems advocacy required for the individual to move to a home of his or her choosing;
(ii) Provide assistance to individuals with significant disabilities who are at risk of entering institutions so that the individuals may remain in the community. A determination of who is at risk of entering an institution should include self-identification by the individual as part of the intake or goal-setting process; and
(iii) Facilitate the transition of youth who are individuals with significant disabilities, who were eligible for individualized education programs under section 614(d) of the Individuals with Disabilities Education Act (20 U.S.C. 1414(d)), and who have completed their secondary education or otherwise left school, to postsecondary life. Individuals who have reached the age of 18 and are still receiving services in accordance with an Individualized Education Program (IEP) under IDEA have not “completed their secondary education.
Sometimes centers are surprised to learn that there is more. With the caveat that any services provided must be consistent with the philosophy in Title 7 of the act, and that centers must be “non-residential”, which provides context for anything related to housing, Title 1 Section 7(18)(B) includes the following:
18) INDEPENDENT LIVING SERVICES.—The term ‘‘independent living services’’ includes— (i) counseling services, including psychological, psychotherapeutic, and related services; (ii) services related to securing housing or shelter, including services related to community group living, and supportive of the purposes of this Act and of the titles of this Act, and adaptive housing services (including appropriate accommodations to and modifications of any space used to serve, or occupied by, individuals with disabilities); (iii) rehabilitation technology; (iv) mobility training; (v) services and training for individuals with cognitive and sensory disabilities, including life skills training, and interpreter and reader services; (vi) personal assistance services, including attendant care and the training of personnel providing such services; (vii) surveys, directories, and other activities to identify appropriate housing, recreation opportunities, and accessible transportation, and other support services; (viii) consumer information programs on rehabilitation and independent living services available under this Act, especially for minorities and other individuals with disabilities who have traditionally been unserved or underserved by programs under this Act; (ix) education and training necessary for living in a community and participating in community activities; (x) supported living; (xi) transportation, including referral and assistance for such transportation and training in the use of public transportation vehicles and systems; (xii) physical rehabilitation; (xiii) therapeutic treatment; (xiv) provision of needed prostheses and other appliances and devices; (xv) individual and group social and recreational services; (xvi) training to develop skills specifically designed for youths who are individuals with disabilities to promote self-awareness and esteem, develop advocacy and self-empowerment skills, and explore career options; (xvii) services for children; (xviii) services under other Federal, State, or local programs designed to provide resources, training, counseling, or other assistance, of substantial benefit in enhancing the independence, productivity, and quality of life of individuals with disabilities;(xix) appropriate preventive services to decrease the need of individuals assisted under this Act for similar services in the future; (xx) community awareness programs to enhance the understanding and integration into society of individuals with disabilities; and (xxi) such other services as may be necessary and not inconsistent with the provisions of this Act.
Your center’s strategic and/or work plan should address which of these you provide and how you approach those services.
“It feels like a risk relying on the word “ableism,” but I want to use it here, because I’m hoping to assemble something with you—something big and intricate—and in order to do that, we need some building blocks—language big enough to hold stories, allow for intellectual exploration, and keep track of patterns. My definition of ableism is a little different from the one in the Oxford English Dictionary, which simply says, “Discrimination in favour of able-bodied people.” Based on my decades of experience and a whole lot of reading of disability studies scholars, I find this definition insufficient. First, it’s built on the assumption that there is a distinct category of “able-bodied” people. While language that makes distinct categories can be useful (you’ll sometimes see me use the term “nondisabled” to illustrate larger patterns), relying too heavily on this black-and-white definition of “able-bodied” is dangerously misleading. It breezes much too easily over the inherent ambiguity built into having a body. “Able-bodied” invites images of ruddy-cheeked farm boys lifting bricks up ladders. Who are these people? And really, how many of us fit sturdily in this category? The legal definition of disability written into the 1990 Americans with Disabilities Act highlights the fact that disability is a far-reaching word that can attach itself to all sorts of bodies, many of them that appear perfectly “able” or are exceptionally able in one area but not as much in another. In fact, our ruddy-cheeked farm boy might also have seizures a few times a year or bipolar disorder or be somewhere on the autism spectrum. The images that come to mind when we use a word like “able-bodied” are just too one-dimensional to be terribly useful.
“The Oxford English Dictionary definition also leaves little room for one vital piece of the story: disability is shaped just as much, if not more, by context than by the body. For example, before spectacles were invented, our population included a much greater number of people categorized as blind. Technology has changed the experience of so many bodies, and as eyeglasses have become integrated into our fashion industry, the stigma around vision that deviates from the “ideal” 20/20 has shifted. (In fact, I’ve owned a decent number of fake eyeglasses in my day. It’s a real thing.) We don’t tend to equate a person wearing glasses with “disability,” even if that same person would have been considered disabled in another time and place. And finally, people are often shifting in and out of a “disabled” state; they break a limb or get the flu or have horrible period cramps or become pregnant or (gasp!) age, and suddenly they find themselves experiencing disabling limitations. If we live long enough, all of us, without exception, will become disabled. This is a prerequisite to having, living in, being a body. The idea that some of us are firmly fixed in the “able-bodied” category is a fiction. A world built on speed, productivity, more, more, more! and far too few bathrooms (and bathroom breaks) does not consider or care for the actual bodies we live in. In other words, ableism affects all of us, whether we consider ourselves disabled or not. Because the disabled body is most powerfully affected by ableism, it is the first to cast a light on the structure, to resist and protest it, to call for its public execution, but we’re all living under its dictates. Ableism punishes all of us. In its most boiled-down, squished together, simplified form, ableism is the process of favoring, fetishizing, and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look, or need differently from that vision. Often, the greater the deviation, the greater the discrimination. In other words, ableism is one possible answer for a young girl seeing herself as valuable as a princess one week and deflating into shame and self-loathing the next. (Thanks for all you do, Oxford English Dictionary, but my definition is better.)
“Without using the “ableism” word, I tried to communicate some of this to (my brother) David. He was nodding along, but I could still feel the chasm between what I know in my blood and my bones and what I’m able to hand him. It’s like we grew up right next to the roar of Niagara Falls, but at some point I moved to a cabin in the quiet woods, and now I’m back home, yelling over the noise, trying to explain how overwhelming it is, but David can hardly hear me or the waterfall. What words could I gather to make David feel the rumble surrounding us? Ableism thunders in the background of every conversation, every story, every building. It’s the atmosphere we breathe, a body of principles, rules we live by. We learn its tenets like we learn about good and evil: with subtle and consistent reinforcement. Not only do we avoid questioning them, it doesn’t even occur to us that there’s anything to question. Ableism pushes assumptions like: Some bodies/minds/modes are inherently and always preferable to others. Hearing/speaking is always better than deafness/signing. Bipeds walking is definitively preferable to paraplegics wheeling. Each of us has a “whole,” “unmarred,” “perfect” body that we were meant to have; the paralyzed, autistic, deaf version is just a sadder, lesser version of that original intent. (This tenet is wrapped up in narratives of fat, aging, gender-nonconforming bodies, too, of course.) The worth of a body is measured by its capacity for work and/or the longevity of life it’s able to sustain. Bodies are products; scars, breaks, and changes in function make that product less valuable. Dependence is inferior to independence. Only some bodies require help, and those bodies are a burden. It’s only practical to shape the world with the “majority” in mind (and there is such a thing as a majority). Disability is always, only a deficit; the world would be a better place if we could figure out a way to eliminate it entirely. And on and on and on . . . If you find yourself nodding along with any of these ableist beliefs, that makes sense. They’ve been a part of our daily diets since infancy. They’ve made us terrified of aging, wrinkles, belly fat, age spots, sagging skin, and stretch marks. They’ve turned us into work machines who regularly abuse our bodies to demonstrate our value—sleep less, work harder, always! They’ve made us ashamed to ask for help, to take medication, to use mobility aids. They stifle our capacity to imagine other ways of being in the world. In order to be okay, we must always strive to be the ideal human: young, smooth, tight, fit, radiant, spry, boundless, unstoppable, independent. Because if we start to spill out of this tiny little mold, what will it mean? Who will we be? It takes hard work and intention to undo these ideologies. They’re loud, insistent, and reinforced at every turn. In fact, the concept of ableism is so deeply entwined with our culture, and, by extension, the wiring of my own self-perception, that sometimes it can be difficult for me to name.
“I can bend to its insistence just as much as anyone else. Just yesterday I whined to my co-worker about my aging face. “I don’t even want to look in the mirror!” I said, covering my face with my hands and making a charming bleh sound. Yeah, I’m not the picture of post-ableism enlightenment you’ve been looking for. Pinpointing the elements that make up an atmosphere of ableism can feel distant and abstract, like knowing the elements that make up oxygen versus knowing what it feels like to breathe in and out. How do I take you through the inhales and exhales?—the way it feels when it’s not just a formula in a textbook but an experience that shapes your every day? Ableism constricts whenever I look for affordable, accessible homes in Kansas City (are there really only three?) or try to navigate the puzzling world of Medicaid in an attempt to keep living. I feel ableism straining my body under the rigidity of inflexible work systems that do not make space for, understand, care for, or believe bodies in pain. I feel the confines of ableism whenever I take the three steps from the driver’s seat to the gas pump and forget to breathe in my concentration to make those three steps look as normal and steady as possible, even though it’s much easier for me to drag my feet and swing my hips across the same distance. Ableism recommends I put myself through pain and expend extra energy to make sure those strangers walking out of 7-Eleven with a Slurpee don’t stare at me, pity me, mock me for the way I move my body. I wanted David to feel this with me. How do I upload a life of memories, a dictionary of definitions, a planet of feelings? How many times would he need to see people avert their gaze, pull their children back, or fall over themselves to dive fifteen feet out of my way or frantically scramble to open a door lest I attempt to open it myself before he’d know what it means to be both invisible and in the spotlight? At what point would the staring start to make him feel unsteady? How can I take him with me through every grocery store where half of the items tower above my head, every obstacle course sidewalk, each maze between me and the ramp at the back of the building next to the garbage dump, every bar and bank and café with counters so high they erase me from the room, every restaurant and airplane where the toilet is entirely inaccessible to me? Would these field trips illuminate why I started to believe I didn’t belong, wasn’t welcome, didn’t have an invitation to be here? Would it solve the puzzle of a smart, competent girl becoming convinced that she’d never be able to join a workforce that exists on this planet? What hour could he live with me that would give him a glimpse of the power health insurance has over my life?
“I ask these questions, not just for David or because I want to understand myself, but because I know I am not the only one who has been relegated to the outside, assigned to the seats designated for Others. So many of us grew up (and continue to exist) under crushing systems—racism, sexism, ageism, classism, homophobia, size discrimination. These structures are like factories pumping out blueprints, designs, infrastructures, tools, and stories that shape our world. They have been running for so long, shaping our cultural history and current landscape, that a lot of us don’t even notice the billows of smoke jetting out of their industrial-sized stacks. They are fueled by the worth and power stolen from whole communities. They distort our sense of self, keep us quiet, and make us feel both small and like we’re an enormous problem, both invisible and put on display, both a spectacle and swept under the rug. This act of thievery can be loud and violent, or quiet and sneaky. There are ways these oppressive systems overlap, feed off each other, mirror one another, and there are also ways they remain uniquely distinct. As a white, cis-gendered, straight woman who grew up in a middle-class family, I won’t pretend to understand most of these structures intimately. Even in my disabled body, I carry a world of privilege. From where I sit and what I can see, though, shame seems to be a bestselling product pumped out of all of these crushing systems. So how do we open the eyes of someone already on the inside to what’s happening on the outside? Can we trace the ripples well enough to name the larger patterns?
“As much as numbers put me to sleep, sometimes they capture the scope of the problem in a way a string of observations can’t. So here’s some data on the United States gathered by Cornell University in 2017: At the time of the study, a person was well over twice as likely to live below the poverty line if they had a disability. The average annual income for a disabled person was $25,400 less than for a nondisabled person. About 80 percent of nondisabled people were employed, compared with 36 percent of disabled people. We could pull many different insights out of these numbers, but one thing is clear: there’s a gaping, fundamental disparity between the choices granted to disabled and nondisabled folks. Then again, numbers catch only so much. Ableism can be hard to hold on to or pinpoint, because it morphs. It lives in distinctly personal stories. It takes on ten thousand shifting faces, and for the world we live in today, it’s usually more subtle than overt cruelty. Some examples to start the sketch: the assumption that all people who are deaf would prefer to be hearing—the belief that walking down the aisle at a wedding is obviously preferable to moving down that aisle in a wheelchair—the conviction that listening to an audiobook is automatically inferior to the experience of reading a book with your eyes—the expectation that a nondisabled person who chooses a partner with a disability is necessarily brave, strong, and especially good—the belief that someone who receives a disability check contributes less to our society than the full-time worker—the movie that features a disabled person whose greatest battle is their own body and ultimately teaches the nondisabled protagonist (and audience) how to value their own beautiful life. All of these are different flashes of the same, oppressive structure.
“Ableism separates, isolates, assumes. It’s starved for imagination, creativity, and curiosity. It’s fueled by fear. It oppresses. All of us. When I was small and just learning how to do life in my body, I didn’t hesitate, didn’t hold back, didn’t worry how it would look, didn’t look for cues or ask for a line. My imagination ruled. I saw no incongruities in being both a puppy rolling around in the mud and a poised princess. I wore dress-up gowns on afternoon trips to the library and drew magic-marker purple diamonds across my forearms and shins. I didn’t wonder what dancing could or should be; I moved my body to music and called it dancing. I used the shelves and cabinets in the kitchen to climb onto the counter, and crawled headfirst down the hardwood stairs at top speed. I scooted around the neighborhood on a red tricycle with streamers flowing out of the handlebars. I was entirely free to be, driven by the innovation my body inspired. This is the wild emancipation I wish for all of us—a world where we are all free to be, to move, to exist in our bodies without shame; a world that isn’t interested in making all of its humans operate in the exact same way; a world that instead strives to invite more, include more, imagine more. That world sees the humans existing on the margins and says, You have what we want! What barriers can we remove so we can have you around? What do you need? How can we make that happen? “When you grow up in a world that doesn’t see you or welcome you or include you or represent you, you believe the world isn’t for you,” I finally told David. “It’s for all the other people.” The ones being seen, welcomed, included, represented. This is why I want to unbury the stories, to bring them into the light, to let them breathe in the open air. Because our stories matter. Not only are we a part of this, but we’re a vital missing piece. Thank you for asking, David—and anyone who’s reading this book. Even more, thank you for doing your best to listen, even when my words feel unfamiliar or uncomfortable. Here’s to building new narrative pathways through our brains, our spaces, our stories. Here’s to dismantling ableism, building a bonfire from its pieces, and toasting marshmallows over the flames.”
According to the CDC, post-COVID conditions are “a wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected with the virus that causes COVID-19.” Often referred to as “long COVID,” the scientific name is “Post-Acute Sequelae of SARS-CoV-2 infection (PASC),” and may also be referenced as “long-haul COVID,” “post-acute COVID,” “long-term effects of COVID,” and “chronic COVID.” People who experience long COVID may have had severe, mild, or asymptomatic COVID-19 in the days or weeks after their initial infection with the virus. New research (not yet peer-reviewed) suggests persons with breakthrough infections who were fully vaccinated and under age 60 may be protected from long COVID, but those over age 60 are not. Long COVID presents as different health problems and combinations of symptoms within a wide range of severity. Common symptoms are extreme fatigue, shortness of breath, problems with cognition, and a racing heartbeat. Neurological symptoms appear to be the most enduring; many long COVID patients report problems with memory and “brain fog.” Children, as well as adults, may experience long COVID. Some studies suggest more women than men may acquire long COVID. (Read some experiences of people living with long COVID.)
In February of 2021, the NIH announced a new initiative to study long COVID. Among the questions the initiative seeks to answer is, “Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such as chronic heart or brain disorders?” As of July 2021, long COVID can be considered a disability under the Americans with Disabilities Act (ADA), Section 504, and Section 1557 if the condition substantially limits one or more major life activities.
The Unique Role of AT Act Programs Persons with long COVID may be experiencing disability for the first time in their lives. The national field of State and Territory Assistive Technology (AT) Act Programs has spent decades committed to serving individuals of all ages with all kinds of disabilities (and combinations of disabilities) wherever they live, learn, work, and play. AT Act Programs uniquely understand and respond to the needs of adults and children that arise from temporary and long-term disabilities. AT Act Programs provide a stigma-free environment for persons with disabilities (and those who serve or love them) to learn about, try out, and acquire the assistive technologies that maintain or improve independence. As we learn more about how to treat long COVID, those experiencing long-term effects from COVID-19 can benefit from the AT services millions of people have sought for staying in or getting back into their lives.
For example, AT Act Programs provide access to:
AT for Fatigue and Mobility: • equipment for bathroom safety • transport wheelchairs and rollators for reduced stamina and stability • gadgets for completing daily living tasks with reduced dexterity (from joint and muscle pain) AT for Memory and Cognition: • an understanding of built-in features of iOS and Android operating systems and apps common to smartphones • loans of tablet computers with apps for accomplishing tasks and goals identified by the borrower • smart pens for keeping up with meetings (or productivity apps that sync to audio recordings) • low-tech solutions and strategies for remembering medications and other essentials • smart speakers and how to use them to support cognition AT for Social Isolation and Telehealth: • loans of tablet computers and laptops for video conferencing, social media, email, and recreation • Echo Show and similar technologies • simplified connected devices for memory impairment • alternative computer access • assistive listening devices
AT for Work: • alternative workstations and workstation adaptations • strategies and technologies for improving stamina at work • information and referral for rehabilitation services and a deep knowledge of cross-disability services as a point of entry for those newly disabled
AT Act Programs provide free demonstrations of assistive technologies in an environment that is without pressure to choose any particular product. The programs additionally provide free or low-cost short-term loans of devices to fill a temporary need or to trial before deciding to purchase, as well as counseling on funding options. AT Act Programs are staffed by professionals who may be AT users themselves and who can link visitors to additional services as necessary or help problem-solve the needs of others in their lives (clients, family members, students). AT Act Programs are the only service network that provides this kind of solutions-driven, cross-disability, multi-age, assistive technology support for maintaining the independence of persons living with long COVID in the pandemic and post-pandemic world.
Question: My board chair is questioning a recent decision I made about a staff member’s performance. I thought supervising staff was my job. Can she, for example, tell me I have to reinstate him after I fired him?
Answer: This is a decision that is made by the executive director, within the policies and procedures of your organization. If your policies require warnings and corrective action plans, for example, you must follow those requirements. If there is a complaint or appeal process for the board’s review then that must be followed as well, but basically the executive director is responsible for the staff and the day to day operations of the organization.
We address this in our Tool Kit for Executive Directors. Here is the section on board roles:
Get Clear About Who Does What
If you get into a tug of war with the board about who’s in charge, your lives will be more frustrating than they need to be and the CIL will lose. Make sure that you as ED know the difference between governance/oversight and management/administration. Then you can help the board to stay on track. When there’s a mismatch of understanding, mismanagement and micromanagement can easily follow. Yes, the board is ultimately responsible for the CIL, but it is you who manages the day-to-day functions. Here is a handy list you can share with board members and reference yourself.
Board of Directors’ Oversight Roles
Determines the CIL’s mission and purpose and ensures the CIL is operating in accordance with that mission and purpose.
Selects the ED and determines their job description.
Provides proper financial oversight (see Section 5), including approving an annual budget; ensures a qualified third party conducts audits or reviews financial statements; ensures the CIL’s assets are protected.
Ensures there are sufficient financial resources to conduct the CIL’s work.