How Assistive Technology can support those experiencing “Long COVID”

What Are “Post-COVID Conditions (Long COVID)?”

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 New research (not yet peer-reviewed) suggests persons with breakthrough infections who were fully vaccinated and under age 60 may be protected from long COVID, but those over age 60 are not.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.

Find Your State or Territory AT Act Program

(For the full article with references check here.)

What is the role of the board?

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?

Board meeting around a table, an older woman standing, rest sitting including one in a wheelchair.

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.
  • Approves financial policies and internal controls, personnel policies, grievance & whistleblower policies; reviews salary information.
  • Hires financial auditor.
  • Ensures legal and ethical integrity by establishing and maintaining a code of ethics and meeting regulatory responsibilities (ensures appropriate paperwork gets filed with government agencies).
  • Stays aware of risk factors and mitigation strategies.
  • Ensures effective organizational planning, both short-term and long-term.
  • Recruits and orients new board members and assesses board performance.
  • Serves as ambassadors individually to the larger community, communicating a positive message agreed upon by the board as a whole.
  • Ensures that programs are in place and achieving objectives to further the CIL’s mission/goals.
  • Supports the ED and reviews their performance regularly.

Executive Director’s Operational Roles

  • Attends board meetings and maintains open lines of communication with the board.
  • Keeps the board informed of what the CIL is doing and milestones in the strategic plan that it is achieving.
  • Prepares or oversees preparation of financial and programmatic reports to the board and annual budget.
  • Determines specific expenditures within the approved budget.
  • Hires, supervises, and motivates the CIL’s staff.
  • Responds to audit findings.
  • Prepares or oversees preparation of annual Program Performance Report to ACL; provides evidence of program effectiveness.
  • Sets compensation and benefits for employees within organizational policies.
  • Interfaces with key staff and board in the development of policies.
  • Develops and implements programs.

Shared Roles

  • Create a strategic plan and three-year work plan to guide the CIL.
  • Develop CIL policies for financial and personnel management, and other key elements of CIL operations.
  • Develop and execute a resource development plan to ensure the resources needed for the strategic plan are available.
  • Evaluate the CIL’s performance periodically to ensure it stays true to its mission and is effectively meeting the needs of consumers.

1099s for Consumers?

Question: As we are assisting consumers with disabilities using COVID CARES Act funds, do we need to send the consumers a 1099 if the total for 2021 is over $600.00?

IRS doesn’t just say that all charitable payments to individuals are not reportable, but the following differentiates aid to individuals from the types of things that are reported on forms 1099 MISC and 1099 NEC. The 1099 forms report various types of income such as nonemployee compensation.

Here is a good newsletter that discusses and differentiates items that are income from items that aren’t income

The following excerpts are from different sections of IRS website.

AID TO INDIVIDUALS , 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 (including psychological counseling). The type of aid that is appropriate depends on the individual’s needs and resources. Disaster relief organizations are generally in the best position to determine the type of assistance that is appropriate. For example, immediately following a devastating flood, a family may be in need of food, clothing, and shelter, regardless of their financial resources. However, they may not require long-term assistance if they have adequate financial resources. Individuals who are financially needy or otherwise distressed are appropriate recipients of charity. Financial need and/or distress may arise through a variety of circumstances. Examples include individuals who are: n temporarily in need of food or shelter when stranded, injured, or lost because of a disaster; n temporarily unable to be self-sufficient as a result of a sudden and severe personal or family crisis, such as victims of violent crimes or physical abuse; n in need of long-term assistance with housing, childcare, or educational expenses because of a disaster; and, n in need of counseling because of trauma experienced as a result of a disaster or a violent crime.

What is meant by charitable class?

charitable class is a group of individuals that may properly receive assistance from a charitable organization. A charitable class must be either large enough that the potential beneficiaries cannot be individually identified, or sufficiently indefinite that the community as a whole, rather than a pre-selected group of people, benefits when a charity provides assistance. For example, a charitable class could consist of all individuals located in a city, county, or state. This charitable class is large and benefits to it benefit the entire geographic community.

If the group of eligible beneficiaries is more limited, such as employees of a particular employer, the group of individuals eligible for disaster assistance (the class) must be indefinite. Otherwise, the charitable class would consist of a pre-selected group of people, which is prohibited. To benefit an indefinite charitable class, the relief program must be open-ended and include employees affected by the current disaster and those who may be affected by a future disaster. In this situation, the total number of potential members making up the charitable class cannot be counted or identified. Thus, while it may be possible to identify the employees who were victims of a present disaster (which is prohibited as pre-selection), it is not possible to identify employees who could be affected by future disasters. Accordingly, if a charity follows a policy of assisting employees who are victims of all disasters, present and future, it would be providing assistance to an indefinite charitable class.

Specific Instructions for Form 1099-NEC

File Form 1099-NEC, Nonemployee Compensation (NEC), for each person in the course of your business to whom you have paid the following during the year:

·             At least $600 in: 

1.       Services performed by someone who is not your employee (including parts and materials) (box 1);

2.       Cash payments for fish (or other aquatic life) you purchase from anyone engaged in the trade or business of catching fish (box 1); or

3.       Payments to an attorney (box 1). (See Payments to attorneys, later.)

Specific Instructions for Form 1099-MISC

File Form 1099-MISC, Miscellaneous Income, for each person in the course of your business to whom you have paid the following during the year:

·             At least $10 in royalties (see the instructions for box 2) or broker payments in lieu of dividends or tax-exempt interest (see the instructions for box 8).

·             At least $600 in:

1.                 Rents (box 1);

2.                 Prizes and awards (box 3);

3.                 Other income payments (box 3);

4.                 Generally, the cash paid from a notional principal contract to an individual, partnership, or estate (box 3);

5.                 Any fishing boat proceeds (box 5);

6.                 Medical and health care payments (box 6);

7.                 Crop insurance proceeds (box 9);

8.                 Payments to an attorney (box 10) (see Payments to attorneys, later);

9.                 Section 409A deferrals (box 12); or

10.              Nonqualified deferred compensation (box 14).

Once more piece of the puzzle:

IRS publication 525 describes taxable and nontaxable income and includes the following:

Gifts and inheritances. In most cases, property you receive as a gift, bequest, or inheritance is not included in your income. However, if property you receive this way later produces income such as interest, dividends, or rents, that income is taxable to you. If property is given to a trust and the income from it is paid, credited, or distributed to you, that income is also taxable to you. If the gift, bequest, or inheritance is the income from the property, that income is taxable to you.

John F Heveron, Jr. Principal

Heveron and Company CPAs

Brief financial updates

CFDA (Catalog of Federal Domestic Assistance) numbers quietly disappeared and were replaced with Assistance Living Numbers.

Let your search engine track down “Why Unrestricted Funds Matter”, a great article on the benefits of unrestricted funds.

Update your “responsible person” information with IRS if their database does not have current contact information. The solution is simple, go to and complete form 8822-B Change of Address or Responsible Party.

For more information see IR-2021-161, July 30, 2021.

The American Rescue Plan Act of 2021 included changes to this credit for the third and fourth quarters of 2021, and recently IRS’ notice 2021-49 provided additional information about these changes. (CAUTION-the economic stimulus package may eliminate this credit for the fourth quarter of 2021).

This credit, which can total $7,000 per employee per quarter (70% of up to $10,000 in wages per employee), can be claimed by businesses and nonprofits that experience a 20% or greater revenue decrease between corresponding quarters in 2019-2021.

Revenue Procedure 2021-33 clarifies that PPP loan forgiveness can be excluded from the calculation of gross receipts. Shuttered Venue Operators Grants and Restaurant Revitalization Grants are also excluded in determining whether there was a gross receipts reduction.

Wages claimed for PPP forgiveness do not also qualify for this credit.

Employers with under 500 employees can amend their 941 forms or file form 7200 to claim a refund.

John F Heveron, Jr. Principal, Heveron and Company CPAs

Why Unrestricted Funds Matter

What is unrestricted funding? Two philanthropy experts explain

When money comes with strings attached, it doesn’t always do the most good. spukkato/iStock via Getty Images Plus

Genevieve Shaker, IUPUI and Pamala Wiepking, IUPUI

Unrestricted funds are grants or donations nonprofits get to spend any way they believe is appropriate to further their mission.

Unrestricted funding can also come with some limitations. Donors might, for example, designate the money for operating expenses like rent or to help strengthen the organization through support for leadership development.

However, only about 20% of U.S. funding for nonprofits has any degree of flexibility, the Center for Effective Philanthropy has estimated.

More often, nonprofits get money for a specific project in exchange for agreeing to several conditions and a specific timeframe. For example, someone might give a museum or a hospital US$20 million to spend building a new wing within three years.

Photo of MacKenzie Scott
MacKenzie Scott gave about $8.5 billion to charity by mid-2021. Evan Agostini/Invision via AP

Starting in 2020, author and billionaire MacKenzie Scott has disclosed donations of at least $8.5 billion to 798 nonprofits. Unlike most major philanthropists, Scott has encouraged the nonprofits to spend the money as they see fit. In addition, foundations including the MacArthur Foundation and the Ford Foundation are providing more unrestricted funding. They hope it will help the organizations they support address complex issues like social and racial justice.

[Understand key political developments, each week. Subscribe to The Conversation’s politics newsletter.]

Why unrestricted funds matter

Like businesses, nonprofits must employ skilled staff and use updated technology – and they have many other expenses.

When funders provide money that can be spent only on specific projects, nonprofits may struggle to cover these overhead costs. Their staff can end up working too many hours for not enough pay, without the equipment and other essential expenses they need to get their jobs done right. This “starvation” can make organizations less effective – reducing how much good every donated dollar does.

When they get multi-year unrestricted funding, nonprofits can become more financially stable. That increases their ability to respond when crises arise or situations change, while making it easier for them to innovate and take risks.

The coronavirus pandemic challenged nonprofits to be flexible and adaptable and to respond quickly to new needs.

But, at least before Scott shook up the charitable world by distributing billions of dollars in unrestricted donations to historically Black colleges and universities and other groups focused on racial justice, nonprofits led by Black people and others with historically marginalized backgrounds were less likely than organizations with white leadership to receive unrestricted funds.

All in all, unrestricted funding can certainly help nonprofits achieve their mission with greater effectiveness. But its role is also more complex than it might appear, for donors and nonprofits alike.

The Conversation U.S. publishes short, accessible explanations of newsworthy subjects by academics in their areas of expertise.

Genevieve Shaker, Associate Professor of Philanthropic Studies, Lilly Family School of Philanthropy, IUPUI and Pamala Wiepking, Visiting Stead Family Chair in International Philanthropy, Lilly Family School of Philanthropy; Professor of Societal Significance of Charity Lotteries, Center for Philanthropic Studies, Vrije Universiteit Amsterdam, IUPUI

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Defending against Cybercrime

Cybersecurity continues to be a hot topic. CNN recently reported that in 2020, ransom payments were up more than 400% from the prior year.

CNN had some insights and some cautions for organizations that may be victims of cybercrime.

If you get a cyberattack, it is probably from someone with extensive IT training, state-of-the-art “burglar tools”, and wildly committed to get money from you. Without professionals on your side, it is not a fair fight!

An outside monitoring company can provide you with guidance to reduce the likelihood of a successful cyberattack, and also educate you and your staff about what to do and what to avoid. For example, consider all of the free resources from

Cyber insurance is also becoming very common and gets you more than insurance. You get access to a team of IT/cybersecurity specialists, attorneys, and negotiators who can deal with the cyber criminals to reduce payouts and help you regain access to your data. Although, CNN points out that information about these policies is accessible to cyber criminals, so they know that you have such coverage and what your limits are. This could lead to demands for more money.CNN reports that negotiations will usually happen quickly, using chat tools. In addition to threatening you with loss of access to your important data, criminals will often threaten to publish confidential information.

CNN recommends keeping software up to date, use multi factor authentication, use firewalls and monitor your network to catch unauthorized Internet traffic.

The National Council on Nonprofits reiterates the risk of cyberattacks and makes regular recommendations. Recent recommendations from them included limiting employee access based on what employees need to do their jobs. This can reduce the amount of data that is accessed if there is a breach and improve efficiency, because fewer options to navigate make it easier for people to do their jobs.

They also point out that your website needs updates to be secure. Websites are built on Content Management Systems, and they typically have additional plug-ins or modules to provide additional functionality. You (or your webmaster) need to make security updates required by these systems. You can and should receive notification when new updates are released.

How do the banks do it? Banks do a pretty good job of not getting hacked, and of keeping their customers safe. What are their secrets? In a recent Rochester Business Journal article, a few local bank security specialists weighed in on their strategies. Their key strategies are the things we have talked about like software updates, strong passwords, two-factor authentication, and educating staff and clients about cybersecurity, especially helping them recognize phishing attempts. They enhance these basic strategies with encryption, regular phishing tests for their employees, and “behavior analytics”. Behavior analytics include things like requiring additional verification when a new device accesses a customer’s account. They also look for unusual scenarios, like logging in to an account from New York in the morning, and from California later that morning.

Microsoft recently talked about the risk of “open redirects”.  These are sometimes used appropriately for business, but recently they have been used more and more by hackers.  When you hover over a website, you may see something that looks okay and that you are familiar with, but when you click on the website you are redirected to a malicious site.

If you intend to go to a site, don’t click on a link, put the address into your browser to reduce this risk. – John Heveron, Jr.

Does the executive order apply?

The morning after President Biden announced the Executive Orders related to required vaccines, I received a flood of calls/emails asking, “Does that apply to us?”

The orders were for federal contractors. CILs that receive direct grants (Part C) are grantees, not contractors. The executive orders do not apply to CILs.

Some centers are requiring staff to be vaccinated. Staff may request a reasonable accommodation for religious or disability reasons. Centers that grant this accommodation are sometimes requiring testing, most typically weekly, if the staff person works in person or from the office.

Giving credit where credit is due

Most grants — including those your center receives from Health and Human Services, are required to include that information in any press releases or other ACL supported publications and forums describing projects or programs funded in whole or in part with ACL funding. This means those carefully developed PSAs to urge people to get vaccines, or the flyers and other materials paid for through the CARES Act or Part C or the CDC Vaccine funds must have language that follows what your grant award says. (Yes, you should read that Grant Award carefully. It does require some things of you.)

Here is the sample language from a grant award from HHS.

If the HHS Grant or Cooperative Agreement is NOT funded with other non-governmental sources: “This (project/publication/program/website, etc.) (is/was) supported by the Administration for Community Living (ACL), US Department of Health and Human Services (HHS) as part of a financial assistance award totaling $XX with 100% funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS or the U.S. Government.

If the HHS Grant or Cooperative Agreement IS partially funded with other nongovernmental sources: “This (project/publication/program/website, etc.) (is/was) supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $XX with XX percentage funded by non-government sources(s). The contents are those of the author(s) and do not necessarily represent the official views of, not an endorsement, by ACL/HHS, or the U.S. Government.

Lobbying: What can SILCs and CILs do?

The first rule is that you cannot ever endorse a candidate. (This has to do with IRS rules around non-profit status, if you have that, and rules against state entities endorsing candidates if you are not a non-profit.)

The second rule is that you cannot use federal money to lobby. This means several things.

  1. A any action you take to attempt to influence related to money you are receiving or wish to receive is considered lobbying.
  2. Any action you take to support or oppose a specific piece of legislation is considered lobbying.
  3. The SILC or CIL can lobby if there are no federal funds spent in supporting the effort either in direct costs, salaries, or indirect costs.
  4. The SILC council members and CIL board members, as long as they don’t imply that they are speaking for the council/board and as long as the council/board doesn’t assist with any costs, can speak to any matter as members of the public unless the state prohibits this in its executive orders or other documents related to council operations.
  5. Testimony around the effectiveness of centers for independent living or other issues of concern to the disability community can be provided by SILC or CIL staff or council/board members at SILC/CIL cost (including federal funds) as long as it doesn’t end with a request for continuing or increasing funds or opposing or supporting legislation.
  6. Reports of statewide effectiveness of IL can be provided by SILC staff or council members at SILC cost, or CIL staff at CIL cost, as long as there is not a request for continuing or increasing funds or opposing or supporting legislation.
  7. You can respond to questions asked in a hearing or other forum, as long as you don’t lobby – that is ask for a specific vote for or against a bill or budget item.

Can I use grant funding to establish incentive programs? New FAQ released.

Dark-haired, bearded man in denim shirt and seated in a wheelchair, sits at the kitchen table with a bowl of food and looks at reports.

Recently our key funder, ACL, released information on using grant funds to purchase incentive items as part of the program of a center. While this FAQ answers the pressing question of incentives related to CDC and ACL funds and COVID-19, the guidance could be considered in other situations as well. You are expected to have a well-designed incentive program, so a written policy and procedure should back up your practice. Some key points:

  • Grantees may use federal funding to establish one or more incentive programs.
  • Incentives should be used in “limited circumstances” to meet program goals.
  • Gift cards, gift items, giveaways and prizes may be used. Cash gifts are not allowed with funding under the CARES Act and from the CDC Vaccine funding
  • When using gift cards you must avoid appearing to endorse, or that HHS or ACL endorses a specific company.
  • Your records must clearly show how each gift card is distributed, verifying that they were used for the purpose of the program and weren’t for example, recycled into petty cash or used for staff or board incentives not related to your incentive program.
  • Your program should address potential ethical considerations, including potential conflicts of interest by board and staff.
  • You must be able to show that the expense charged to your federal grant is reasonable and necessary, and if it supports goals in more than one grant, is properly allocated across your funding sources.

ACL recommends that grantees consider the following seven elements in designing an incentive program:

  1. Proposed Incentive: i.e., what incentive will be provided?
  2. Justification: what is the purpose for the incentive and what is the specific reason for selecting this incentive? What evidence indicates that an incentive is needed, and what evidence suggests that the selected incentive will be effective at achieving the desired result?
  3. Anticipated gains: explain how providing such an incentive will defray societal costs or have a positive return on investment, for example by increasing overall participation. Additionally, describe potential unintended negative consequences and how those are outweighed by the benefits.
  4. Defined amount: cost per person and total allocated funding for the recipient incentives.
  5. Qualifications for issuance: what makes a person eligible for the incentive? Does it take into consideration issues related to equity in your community?
  6. Method of issuance and tracking: how will the incentive be delivered? Does the proposed plan and implementation align with any relevant policies and procedures governing your organization (e.g., procurement, ethics, etc.)? How will the budget and supply be tracked? Can the grantee assure usage will only be for allowable expenses?
  7. Method of evaluation: how will the incentive plan be evaluated for effectiveness?

One last thought. While you cannot guarantee how an individual will spend a gift card incentive, you can communicate your expectations that it will assist them in meeting the unique needs presented by the pandemic.