Warehouses of Neglect…

The disability community has been raising red flags regarding institutions for decades. We must continue to elevate the voices of disabled people to ensure they have community-based services in the community. We wish our community would have been heard and taken seriously as there are more reports coming out about the harmful practices of any institution. Just this month in June,  a report was issued about Psychiatric Residential Treatment Facilities (RTFs), Warehouses of Neglect: How Taxpayers Are Funding Systemic Abuse in Youth Residential Facilities? Everyone in IL must see this! Especially given that one of our very important core services in independent living is institution transition and preventing people with disabilities from entering institutions. More information is listed on the U.S. States Senate Committee on Finance’s page.

The report is about a two-year investigation of four major for-profit companies that reveal RTFs receive billions of dollars in federal funding – including Medicaid and child welfare dollars – and provide substandard care, and subject kids to abuse and neglect. The report calls for Congress, industry, federal government agencies, and states to raise standards for congregate care, strengthen oversight, and invest more in community-based alternatives. The NBC News report summarizing some of these findings is found here: https://www.nbcnews.com/news/us-news/residential-treatment-centers-senate-report-rcna155177

The report said there were “numerous” accounts of residential treatment staff members’ “dragging or throwing” children in their care, and pushing them into fences, walls and furniture,” based on the companies’ records.

“Residential treatment is relied on because it’s an alluring model if you don’t know what’s going on in there,” Reagan Stanford, an attorney with Disability Rights Arkansas, said during the hearing. “The facilities sell themselves as specialized providers with all the services a child will need and places for children with nowhere else to go, she said, “but the reality is not that.”

Dozens of youth rights advocates and people who’d been placed in residential facilities as teens attended the hearing. Sen. Mike Crapo, R-Idaho, the ranking member of the committee, addressed them in his opening remarks.

“To the victims in the audience and around the country who’ve suffered abuse and neglect in residential treatment, your experience is entirely unacceptable,” Crapo said. “Facilities entrusted with caring for our most vulnerable youth must be held to the highest standards and subject to routine oversight.”

In one incident the Senate report described, which was also detailed in a state investigation report obtained by NBC News, a female staff member at a Universal Health facility in Oklahoma admitted to molesting a girl in 2021 and said she planned to have “a more intimate relationship” when the child left and turned 18. The facility moved the staff member to another unit after patients reported the misconduct, but she continued to stand outside her victim’s window each night, according to the report. Universal Health told the committee the staff member was later terminated. 

A woman holding a sign that read, "Child Abuse Is Not Mental Health" cries
Youth rights advocates gathered at the Capitol to share their stories and push for reform.Mariam Zuhaib / AP

At an Acadia facility in Arkansas, according to the report, company records showed staff members simultaneously placed children in a seclusion room and chemically restrained them — which is prohibited by federal regulations — 110 times in 30 days. Acadia executives told the Senate committee that the facility employees had not been following company policy or government rules.

This issue is a significant concern for Independent Living. Unfortunately, it is not a new issue. This is why it’s essential to continue advocating to be heard, and why Independent Living, as one of the very few disability-led movements, is so important. For a long time, large for-profit companies have been running congregate living for people with disabilities. Prior to that, state-run institutions were responsible for the long history of institutionalization. Transferring the same practices, including physical restraint, isolation, heavy sedation, and more, from the public to the private sector has not resulted in any improvement.

With youth, much of this comes from parents who don’t know what to do regarding their children’s mental health. Parents fear for their safety or the safety of others in their community. They fear their children may hurt themselves. As the children grow the concern increases. Parents and youth often don’t receive all the alternative and unrestrictive options available, or there are significant barriers to accessing solutions. These youth need support to meet their mental health needs so they have a chance to transition successfully to adult life. And that support needs to happen at home and in the community, not in institutional settings.

Did you know there are home and community-based services for children under 21-years of age (including children on long waiver waiting lists)? All states must comply with Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit requirements to provide all medically necessary care to children in Medicaid, including community-based alternatives to RTFs, and are encouraged to take federal resources to build additional support for community-based services whenever possible (e.g., intensive care coordination to divert youth from these facilities and family-based services and supports).

When these children’s symptoms go untreated, their conditions worsen over time, leading to numerous adverse outcomes. These outcomes include recurring mental health crises, emergency room visits, involvement in child welfare and juvenile justice systems, as well as unnecessary institutionalization. As a result, states are also violating children’s rights under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

Home and Community-Based Services (HCBS) should be available in state plans and provisions. However, states often don’t address these concerns as deeply as needed. HCBS programs are defined and funded through these written state plans, regularly reviewed, and updated. How has your CIL been involved in providing feedback? If this is something you are not involved in, you should reach out to your state’s Medicaid agency to begin making relationships and getting a seat at the table. Otherwise, these plans may be created about us, without us. Consider how HCBS funds CAN be used. It never has to be congregate living. What is your CIL or SILC doing to advocate for HCBS, including EPSDT?

Who is the enemy?

Republished with permission from Kimberly Tissot of Able South Carolina.

Note: This is from a couple of years ago but the event still has value as a teaching moment.

I’ve had a hell of a week and I need kindness. I found IL to be my home 10 years ago and I’m incredibly proud of the work of Able SC and especially our team. While we are no strangers to non-disabled folks getting upset with us, I have never felt more betrayed by my own community than I have this week.

Spiral notebook with Know Your Enemy written on the cover, and a pen beside it.

After learning that members from our own community talked about organizing a protest on our CIL because of our presence on a national person-centered planning committee, I think we all need to wake up to reflect and remember we are in this fight together and we must communicate with each other better. Our organization, as well as three other IL orgs, are serving on a committee because we wanted to ensure disability representation with an organization that typically overlooks us. This shouldn’t be a problem, but for some reason, it was to this group. I think all three IL members are all pushing for more representation as well, something that could have been learned if this group simply reached out to us. In short, let’s communicate more and learn and grow together. If we don’t understand something, we need to research and learn. We are in this fight together and we need to look out for each other. Especially in these times.

In closing, my assistant director sent the below email to our staff to provide a reflection of the situation. It has been a learning experience for all 53 of us at Able SC and I wanted to share with you all.

Able SC Staff, I wanted to email you all about some recent
events. Everything is under control now, but I thought it was a good teaching
moment about different advocacy approaches. Warning: it’s a long email.

A couple of months ago, ACL sent out a call for nominations to
serve on a national person-centered planning (PCP) policy and practice
committee. PCP is a required practice for all Medicaid Home and Community Based
Services, and in most cases is not implemented properly. PCP is
consumer-centered, but not always consumer-driven. It’s a step closer to IL,
but not quite there, even when implemented correctly. However, since our mantra
and the mantra of the disability community is “nothing about us without us,”
Dori put her name in the hat and was chosen to serve on this committee to
influence policy. Dori has been trained on PCP, has done trainings for others
on PCP and pushes a more consumer driven model, and has served on our own
state’s PCP committee with some other members of our staff so she was well
qualified in addition to her personal experience.

Now comes the controversy. First, the Autistic Self Advocacy
Network submitted public comments on the lack of representation of individuals
with disabilities on the panel. Many folks from the IL community jumped on in
agreement (including us), until several members of the committee chimed in and
stated they did have I/DD, including our very own Dori. And these weren’t just
token members as we sometimes see; they were high ranking members within their
prospective organizations. So then the community turned to wanting to boycott
and protest the committee because of the topic itself. Next, someone who used
to be a partner with us here in SC who is on lots of listservs chimed in and
said, “Let’s start with Able SC….the self-described CIL in Columbia which
employs Dori Tempio and has allowed her to be on this panel…” And then
without even reaching out to us, several of our sister CILs in other states
jumped right on board with the outrage. Luckily, Kimberly has established some
great relationships and several people reached out to let us in on what was
happening and also pushed back on some of the criticism. Kimberly also had
direct conversations with some of the naysayers to explain our position. It
seems to have died down for now.

Some reflection from this drama:

  1. Advocacy needs to be well-informed and well-researched. No one bothered to contact Dori to find out why she, as a person with a disability, felt compelled to serve on the committee.
  2. Strategy matters. PCP exists, it’s progress from where we were, and it doesn’t look like it’s going anywhere any time soon. We have taken the approach of being right up in the middle of discussion so we can insert the IL philosophy into it every chance we have. Some organizations would rather use their energies to protest. I know protesting can be an effective form of advocacy; disability rights history has some great examples of this. But protesting is typically a last resort when discussions have broken down, progress has stalled, and leadership is shutting the oppressed population out of the process. Those circumstances don’t apply here, at least not at this time. Are there people on the committee who believe in the medical model and think people with disabilities can’t be independent? You bet. But guess who will be there to put them in their place when they speak nonsense? That’s right—Dori Tempio!
  3. Don’t alienate your allies. Why would our IL partners want to focus on fighting with us instead of trying to reach out to us to find common ground and pool our collective power? There are so many battles left for the disability community to fight; why go to war with each other?

In summary, I thought this real-life scenario was an excellent
example of different advocacy approaches and gets to the heart of who we try to
be as an organization. We make non-traditional allies, we are at the table with
decision makers, we are educating, and we ARE advocating..in a way that has
worked for us time and time again. Thanks to each of you, as I know you are all
working on a regular basis with folks who disagree with you, and you are moving
the needle slowly but surely in a way that gathers the confidence and respect
of others and brings on partners instead of alienating them. You all rock!

Disaster fantasies – how to manage risks

Do you have fears or qualms about anything happening in and around your center? Take a few minutes to make some notes — what do you worry about? If you aren’t a worrier, what things have you seen go wrong with other non-profits in your circle of peers in your state, or in other organizations in your city or county? I have a list of things that worry me. Let me share a summary of them, then talk about them today and in future posts.

  1. Financial risks. More often than we should, we learn about a center where money has been stolen from the organization. So what can you do to mitigate that risk?
  2. Risks of staff not doing their job. You have specific requirements from your funding sources. These should be written into job descriptions and individual performance should be evaluated.
  3. Weather or other disasters. Disaster policies, drills and state-wide collaboration are important.
  4. Security of both electronic and paper records. Confidentiality is key. Not everyone should have access to every file.
  5. Risk of a law suit from a staff member or consumer. Do you have policies and procedures? Do you follow them? Do you have insurance to cover when problems still exist?

Let’s look at the first of these. What kinds of things can you do to mitigate the risk of theft of funds from your organization?

Do you have job descriptions and policies and procedures that require good internal controls? How do you to make sure these controls are consistently applied? We saw something interesting related to the Pandemic. As staff moved to remote work, some of the internal controls were dropped. I am sure the intent was that these would be set aside temporarily — but in some situations the CIL failed to put them back into place or replace them with other safeguards. Be sure you look closely to ensure internal controls are in place.

Is your board involved in mitigating financial risks? Consider how they review financial statements — do you make key notes so they are aware of your greatest concerns? Is someone on your board expert in this area? How is the board involved in the separation of duties? If you have a small staff, a board member might assist with justifying bank statement against the financial statements for example.

We also suggest that you mitigate the risks by purchasing insurance and bonding key staff. Liability or other insurance may be helpful. Bonding should always include the bookkeeper or accountant. You may also want the Executive Director to be bonded.

Your main funder has provided training on Financial Risk Management. Check it out here https://www.ilru.org/training/financial-risk-mitigation-independent-living-15-hours. If you prefer a written manual, check this out: https://www.ilru.org/financial-management-for-centers-for-independent-living-0

Why can’t we all get along?

As the state networks wind down their work in developing a SPIL, I am weary and discouraged at how many of the networks are fighting with each other.

It isn’t so bad when CILs and the SILC are collaborating and trying to bring the DSE along. The DSE is part of the network, but not necessarily part of our community, so I understand when there is disagreement there. After all, they do not necessarily agree with or even comprehend IL philosophy. They sometimes impose things they shouldn’t and we are forced to advocate with them to take back our power. It is a constant effort to educate them and show them what consumer control looks like at every level. More about the role of the DSE in IL in another post.

But among CILs and with the SILC, we should all be part of the same team. There is a big, wide, ableist world out there and most of us are weary with THAT fight. How on earth do we have the energy to fight each other? But somehow we do. I know of a state where two CIL directors are at odds and will not attend the same meeting — not even on ZOOM. States where the SILC and CILs are wrestling for power instead of working together. States where the CILs are split on approval of the SPIL and there is barely a majority to sign for approval. I hear harsh judgment from one person in the network about another, and I am beyond sad.

Let me suggest that there is not a single way of looking at the circumstances around us. My viewpoint may or may not agree with yours on more than one thing. We all come from different backgrounds, different decades, different parts of the country, different life experiences. We will not agree on everything.

But there should be one very important thing we do agree on, and that is to listen to and respect each other, no matter what. Don’t give me a line about a person having to deserve that respect. Stop. None of us is perfect, and we need to allow imperfection in our community. If we don’t, if we judge harshly, we get in this mess of fighting each other all the time. Let’s agree that every human being is deserving of respect, no matter how angry we are at their behavior. If you judge that someone is out of line, behaving in an ableist manner, doesn’t get IL philosophy, has acted in their own interest rather than in the interest of IL — so be it, but it doesn’t give you the right to dismiss them as the enemy and drive yet another wedge in what could be a very powerful alliance. It is so easy to criticize them, especially to our friends when the person isn’t around. Let’s stop!

Instead let’s get close to them. Remember that many of us are wounded by the ableist world, have been disrespected, taunted, ignored, dismissed, abused. Take the time to listen to those we disagree with first, then draw them into our community by helping them understand what that powerful, consumer-controlled community is. As peers, let’s support one another and find our way to a stronger and more and more powerful team.

There is a place for calling out the things that weaken IL, but that place is face-to-face, one-to-one and not in complaining to each other about “them”. If we listen, if we learn from each other. If we pool our experience and our expertise, we can be more powerful. We wonder why our movement is weak? This is at least one element that weakens us. And we are in control of how we respond to each other and make our movement stronger.

Are you a new ED? We have some support for you.

Hello, and welcome to the training and technical assistance options for you as a new Executive Director of a Center for Independent Living. I hope you will be interested in the monthly Executive Director Call. They take place on the second Monday of the month (unless it is a holiday) and you can subscribe by going to https://www.ilru.org/home and signing up for the email list.

I also offer a regular one-to-one call to new EDs – weekly or less often if weekly is too much – so that you can ask whatever questions have come up that were not urgent but you’d like to discuss.  Let’s talk and see if that is useful for you. Email me at paulamcelwee.ilru@gmail.com and we can set a time.

We have an excellent course on line which you complete at your own pace. You’ll find it here: https://www.ilru.org/training/management-101-guide-for-new-cil-executive-directors-1-course

Here are a couple of links you might find useful. Do you have a background with Independent Living? If not, this history may be interesting:


Here are the requirements reviewed by your primary funder when they perform onsite review: https://www.ilru.org/training/ready-for-review-using-acl-s-compliance-outcome-monitoring-protocol-comp-tool-achieve These give you a tool for proactively measuring your conformance with regulations and law.

You might also be interested in financial management training. It is broken into segments for manageable scheduling. https://www.ilru.org/financial-management-for-cils-regulations-and-beyond

Leases – A big change in the accounting rules

by John Heveron

It has been well publicized that accounting for leases is changing dramatically, but most of us are just getting our first hands-on experience with this change. The new rules are being implemented for calendar year 2022 and fiscal years ending in 2023.

This may raise a question about whether federal cost reimbursement will change.

An important first task is to determine whether you have operating leases or financing leases.  In prior years we used the terms operating lease and capital lease.  The new financing leases have similar characteristics to capital leases and, sometimes, the terms are used interchangeably.

Any lease that it is not a financing lease is an operating lease. A financing lease will have at least one of these characteristics:

  • * ownership transfers to the lessee at the end of the lease,
  • * the leased property can be purchased at the end of the lease and purchase is reasonably certain,
  • * the length of the lease is for a major part of the useful life of the property,
  • * the present value of the lease payments equals or exceeds substantially all of the value of the property, or
  • * the asset is specialized and there is no practical alternative value for the leased property

If none of these characteristics exist, you have an operating lease and you will continue to record rent expense, so there shouldn’t be any adverse impact on your federal reimbursements.

None of these characteristics would typically exist for a facility lease (although that is possible).

If you do have a financing lease, you will be recording interest expense and also amortizing the asset (your right to the leased property). The amortization is uniform over the term of the lease, but the interest works like a loan, with more interest upfront, so expenses would be somewhat more initially than an operating lease, but not more than a prior capital lease under the old rules.  Your federal reimbursements should not differ from a capital lease to a financing lease, but if an old operating lease is now characterized as a financing lease, your expenses and your reimbursements could increase slightly. Uniform Guidance and HHS Uniform Administrative Requirements both use generally accepted accounting principles (GAAP) as a starting point, so unless some modification is enacted, reimbursement for the accelerated expenditures should be permitted.

The big difference occurs on your balance sheet. All leases with a term of more than one year are capitalized (treated as assets) on your balance sheet. This is done by calculating the present value of the future lease payments including options that are likely to be exercised. Once that calculation is done you will record an asset that you might call “leased property”, or some other descriptive account, and a liability that you might call “lease liability”.

This raises several questions, including:

  • * what about donated space? These rules don’t apply to donated space,
  • * what about a below market lease rate? This could be a partial lease and a partial contribution, or just a good deal,
  • * do these transactions get recorded retroactively or prospectively? An accounting option, which is probably the easiest way to implement the new reporting rules would be to record the asset and liability at the beginning of the current year in your financial statements or at the beginning of the lease if that is later,
  • * what discount rate should be used to calculate the fair value? The rules say that if there is a rate implicit in the lease, we should use that, but that is rare so we can use a “risk-free rate of return” at the time the lease is recorded. For leases that have been in place but are recorded initially in your calendar year 2022 financial statements, you could use the federal bond rates. Federal bond rates at the beginning of 2022 were 1.34 % For 2 year bonds, 1.62% for 5 year bonds, and 1.83 For 10 year bonds,
  • * should leases be broken out between short-term and long-term? Yes they should, and assets and liabilities related to operating leases and financing leases should be reported separately, and
  • * Is there any other impact other than the extra work? Adding these assets and liabilities to your balance sheet could impact your compliance with loan covenants. Most bankers are well aware of this change, so if you believe your compliance with covenants will be affected, you should have a conversation with your banker.

Do you have a Unique Entity Identifier? by John Heveron

In the past the federal government used DUNs numbers to identify entities that it provides funding to and does other business with.  Now they are assigning and using Unique Entity Identifiers (UEIs).

If you currently receive, and have been receiving federal funding, you most likely already have a UEI.  You can find that by logging into SAM.gov.  You should be familiar with that website because of contains other important resources. 

If you will have a single audit for 2022, you will need your UEI to submit that audit report to the Federal audit clearinghouse.

SAM.gov will allow you to apply for a UEI, or update your information.

You may need documents to validate your request for a UEI, including a receipted copy of your articles of incorporation, your IRS exemption letter, or other documentation such as a bank statement or utility bill.

Independent Contractor V. Employee Guidance yet Again

by John Heveron

The US Department of Labor has proposed changing how workers get classified as employees or independent contractors again. 

Changes under the Trump administration made it easier for businesses and nonprofits to classify workers as independent contractors by focusing on just 2 key factors.  The DOL is proposing that several factors be analyzed to determine whether the worker is economically dependent upon the employer for work rather than being in business for themselves. 

Individual factors would not be given special weight, they would be considered as a whole.  Factors would include:

* the nature and degree of the workers control over their work,

* the relative investment of the worker and of the employer,

* the workers opportunity for profit or loss,

* the permanence of the working relationship between the worker and the employer,

* the degree of skill necessary to perform the work, and

* the extent to which a worker’s duties are an integral part of the employer’s business.

Passing along — fellowship for self-advocacy for individuals

Blue banner with white text: ACL Announcement Self Advocacy Resource and Technical Assistance Center Fellowships Now Open for 2023 Projects
Application Deadline: Monday, January 9, 2023 | 9 PM ET   Apply for the fellowship   The Self Advocacy Resource and Technical Assistance Center (SARTAC) is now accepting applications for fellows for a one-year self advocacy project.

SARTAC will select six fellows, who will grow their leadership skills as they work on their projects with host organizations. Fellows will work on their projects about 14 hours per month and will receive $5,000 to complete their one-year project. The fellowship begins on March 1, 2023 and ends February 28, 2024.

SARTAC will choose fellows and contact all applicants by February 14, 2023.

To learn more about the application process, SARTAC will hold a Zoom meeting on Thursday, December 1st, at 1 PM ET. Meeting information is below: Meeting ID: 324 815 633 Call-in number: 1-929-436-2866 Learn more about the fellowship and find past and present projects and examples of final products on the SARTAC website.

For more information, please contact Candace Cunningham or call 816-235-5833. SARTAC was created to share self advocacy ideas and help others across the country. It operates with support from ACL. The mission of SARTAC is to strengthen the self advocacy movement by supporting self advocacy organizations to grow in diversity and leadership. Facebook Twitter YouTube  ACL.gov  
Advancing independence, integration, and inclusion throughout life   Please do not respond to this e-mail. Contact the Administration for Community Living.
    Forward Forward

Recent tax legislation by John Heveron

In addition to the student loan forgiveness enacted by President Biden, and estimated to be worth between $390- $500 billion by The Tax Foundation, Congress recently passed, and the president signed, the Inflation Reduction Act. Student loan forgiveness for nonprofit employees expires on October 31, 2022.  This is not the same as the recently enacted student loan forgiveness program.  Some of the limitations in that new forgive this program to not apply to nonprofit employees.

Employees can go to https://studentaid.gov/PSLF to check their eligibility for forgiveness.

The National Council of Nonprofits put together a concise outline of how this legislation impacts nonprofit organizations. Highlights are below.

The new law provides enhanced and extended tax breaks for energy efficient construction in the form of tax credits.  Nonprofit organizations can transfer these credits to contractors and reduce the contract cost for these energy efficient systems.

Healthcare premium tax credits under the Affordable Care Act are extended for three years. Credits are increased for participants who are between 100% and 400% of the federal poverty level.

Visit the National Council of Nonprofits website for a summary of the inflation reduction act.

Penalty Relief for Late Filed Tax Returns

IRS recently issued Notice 2022-36 which provides penalty relief for 2019 and 2020 tax returns that were filed late. This penalty relief means that unpaid penalties will be forgiven and penalties that have been paid will be automatically refunded-no application is required. Delinquent returns must be filed on or before September 30, 2022 to qualify for this penalty forgiveness. Penalty relief will be for the following returns:

  • Form 1040 personal income tax returns,
  • Form 1041 trust and estate income tax returns,
  • Form 1120 corporation income tax returns,
  • Informational return such as form 1099,
  • Form 990-PF-private foundation annual filing, and
  • Form 990-T-unrelated business income tax return

Forms 990 and 990-EZ are not listed in this notice, but they are still eligible for the normal abatement request process.

More details can be found in Internal Revenue Service Notice 2022-36.