How does a center determine eligibility?

Question: At a recent staff meeting, staff were asking for clarification about our Eligibility Statement on our consumer intake form and what exactly they were certifying by signing. I am embarrassed to say that I did not have a good answer for them, but promised to look into it.

Our intake eligibility statement reads:

Eligibility Statement:In accordance with Department of Education 34 CFR. Parts 364, 365, 366, 367 Subpart D, Paragraph 364.40 this statement of eligibility is necessary. By the signature of the staff below, it is certified that the applicant has met the basic requirements specified in Paragraph 364.40.

These are: The individual applying for services experiences a significant disability.  

Can you shed some light on this? I don’t even know where to begin to look for paragraph 364.40. 

Reply: The statement does need to change because we are no longer under the Department of Education (34 CFR) but are now under the Department of Health and Human Services, Administration on Community Living, Independent Living Administration (45 CFR). The CFR is the Code of Federal Regulations. You can find it with a search for 45 CFR 1329. Do look at the one from .gov and not the version posted by other entities – I have found they are not always up to date. SO an important hint — if your policies reference 34 CFR you need to update them.

45 CFR 1329.4 is the new regulation section with definitions, and states:

Cross-disability means, with respect to services provided by a Center, that a Center provides services to individuals with all different types of significant disabilities, including individuals with significant disabilities who are members of unserved or underserved populations by programs under Title VII. Eligibility for services shall be determined by the Center, and shall not be based on the presence of any one or more specific significant disabilities.

Note that the Center is to provide services to people with significant disabilities. All that is required for eligibility is that you ask the consumer if they have a significant disability. If the answer is yes, then they are eligible.

The technical definitions of significant disability is found in the same section of the regulations, and states:

Individual with a significant disability means an individual with a severe physical or mental impairment whose ability to function independently in the family or community or whose ability to obtain, maintain, or advance in employment is substantially limited and for whom the delivery of independent living services will improve the ability to function, continue functioning, or move toward functioning independently in the family or community or to continue in employment, respectively.

I want to emphasize this definition. It is important that centers are consistent in assuring that the people they serve, and the majority of the people on their board, are those with significant disabilities as required in the law and regulations. On occasion, when I am working with a center board, I ask if the majority of their board members have a significant disability. What happens next is very disturbing. Sometimes there is a scramble for board members to think of what their disability is because, frankly, they have not been meeting this requirement. If the board member doesn’t see themself as part of the disability community, I would challenge that they probably don’t have a significant disability.

Staff that do too much?

Question: 

I’m looking at the ILRU website hoping to find an existing training on Boundaries … topics like doing things for consumers rather than empowering them, stepping on consumers’ toes, respecting consumer privacy, etc.

I’ve been having some difficulty with peer advocates maintaining appropriate boundaries, so I’m going to do an advanced training with the group. Before creating training materials, I’m seeking on your website hoping something is there as I know you provide high-quality trainings.

I like to start with some philosophy, because the Rehabilitation Act, the first paragraph of Title VII begins with that.  It reads: The purpose of title VII of the Actis to promote a philosophy of independent living (IL), including a philosophyof consumer control, peer support, self-help, self-determination, equal access,and individual and system advocacy, in order to maximize the leadership, empowerment,  independence and productivity of individuals with disabilities,and to promote the integration and full inclusion of individuals with disabilities into the mainstream of American society…

That language – “a philosophy of consumer control, self-help,self-determination … in order to maximize leadership, empowerment, independence and productivity” – state our goal clearly in terms that emphasize the individual’s control of their life and decisions.

We also have a four-part series of videos around the history and how that philosophy came to be. Each is about 20 minutes and works well as part of a staff meeting. You can find these at https://www.ilru.org/il-history-and-philosophy-orientation-for-il-staff

As you move from philosophy to action,  an Introduction to Consumer Service Records, IL Plans and Service Coordination is always a good foundational piece https://www.ilru.org/introduction-consumer-service-records-independent-living-plans-and-service-coordination-for-cils

You might help them think about scenarios in their own lives, or give sample situations for discussion and learning. A scenario promotes discussion and gets everyone’s thoughts as you address a hypothetical situation. Keep them open-ended so that your discussion can cover multiple possibilities. Here are a couple of examples:

Sue is 31 years old and living at home with her parents. She would like to move out on her own, and you have worked with her to develop a budget to make that possible. “I don’t know how to tell my mom,” she confides. “Will you talk to her?”

You are giving a couple of consumers a ride home from your annual dinner. They ask you to drop them off at a local bar. And then they ask you to join them. What do you do? How do you separate your activities as staff from your activities as a friend?

Dad calls you about his adult son, Joshua. “Josh has been coming over there every week for a couple of months now. Is he making any progress?” What do you say?

I am sure you can think of other examples. Your own written policies and procedures should then mirror your philosophy and specifically state that the individual is in charge of their decisions. When it comes to helping staff understand boundaries, no tool is greater than their own experience as people with disabilities. 

Those things should get you started. Reach out again when you are ready for more.

Tips for bringing a new CIL ED on board

I would probably customize a training plan based on what the new executive director already knows. If s/he has worked for a center in the past, s/he may not need history and philosophy but might need board and finance training. There is training for almost every item in the E.D.’s job description. You can search the website for a topic, or contact me and I will help you find what you are looking for. I like everything to be in the context of philosophy so I have included that.

 The Rapid Course on history and philosophy is three parts and found at http://www.ilru.org/training/foundations-independent-living-series or if they don’t love that read and test format, the short films at http://www.ilru.org/il-history-and-philosophy-orientation-for-il-staff are great.

The financial management workshop (15 hours) at http://www.ilru.org/training/financial-management-workshop-for-cils-regulations-and-beyond is great for financial regulations. The topics are broken down so the person can watch what is the most useful, in any order.

For the IL regs, the first item on this page. http://www.ilru.org/training/20th-annual-silc-congress-path-forward-greater-independence

For board recruitment, http://www.ilru.org/training/attract-and-retain-your-best-cil-board-members

I also suggest searching Board Cafe and Non-profit management for board related training as well. There is a lot out there in the mainstream that is useful.

There is also a monthly call for new executive directors. Be sure to let me know so I can sign them up for that call.

 How is that for starters? A new E.D. can request anything specific from me any time so make sure they have my name and number. 

Are Resource Development Costs direct or indirect?

First a refresher — while fund raising costs are not typically allowed with federal dollars, the Rehabilitation Act specifically requires centers, and allows SILCs, to conduct Resource Development.  Rule number one, always call your activities to increase your resources (including funds) Resource Development. If you are a SILC this must be addressed in your State Plan for Independent Living.

Rule number two — it is wise to identify and track these costs separately. We suggest this because it is easy to spend more than you bring in if this office is not effective, and you want to know that so you can improve your efficiency if needed.

If you have a separate cost center for resource development, treating it as a direct cost, it must include that cost center’s fair share of the indirect costs based on your indirect cost rate proposal.

Some of you included resource development totally as an indirect cost. If so, then the answer to the question is that resource development costs are indirect, and should be allocated back across your cost objectives.

So, as is so often the case, the answer to our question is “It depends.” And it depends on what you said you would do in your approved indirect cost proposal.

Who can we count in Peer Support or other group classes?

Question: I have a question about peer support groups or groups where we teach IL skills. For example, a small group where consumers can connect with one another or learn about resources (e.g., housing), or teaching skills such as money management. These are not community outreach services, but consumer groups. It was my understanding that people attending these groups would need to be consumers of our center and have a CSR. I’ve recently been told this is not the case and those groups can be open to anyone in the community who wants to attend. We are starting to increase the number and type of groups we offer and I want to confirm this as this has implications on how we move forward.

There is not a prohibition or a requirement around who can attend, but there is regarding who “counts”.  The answer varies based how you want to count them. You need to set up the structure for your groups in your policies and procedures, and centers vary greatly on how they treat this.

I like to see people with disabilities, with or without a Consumer Service Record, attend events and be part of the disability community that gathers at a center, so that is my bias.

To count the individual as receiving peer support or independent living skills training they do need a goal (which can be a goal set by and accepted by the group) and a CSR. But there is no prohibition to others attending and “auditing” the group, so to speak. You can’t count them as receiving the core service on your Program Progress Report, but they enhance the overall involvement of the disability community. They might be some of the peers offering support, even if they don’t have a goal to receive it.

If you have folks that dominate meetings and exclude others – then you might want or need a policy to help the meeting include everyone. One approach could be to only have folks attend who have CSRs.

For SILCs – How to request a technical amendment

ACL/ILA has asked the SILCs to either extend or amend their State Plan for Independent Living (SPIL) as we go into the new planning cycle. This most recent guidance allows for time to complete the review and acceptance process for a new SILC template, to be used in 2020 for the next three year cycle of your plan. The “state project officer” for all SILCs is Regina Blye. Her contact information is Regina.Blye@acl.hhs.gov Here are excerpts from the announcement letter which specifically tell you how to do a technical amendment — an amendment that doesn’t change the plan substantially, doesn’t change the Designated State Entity (DSE) and will carry your forward for the next year.

(Page 3) Required steps for a technical amendment to a SPIL are (in the following order):

 A written statement to ILA, via the state project officer, requesting a technical amendment to the FY2017–2019 SPIL.

  1. Submit an approvable SPIL amendment request that includes all required signatures to your project officer no later than July 31, 2019 (to allow adequate time for the PO to complete the SPIL amendment process before expiration of the current SPIL in effect on September 30, 2019).

 Amendments must be signed by three parties: the chair of the SILC, acting on behalf of and at the direction of the SILC; not less than 51 percent of the directors of the Centers in the state; and the director of the DSE.

(Page 4) Important information about these options

ACL strongly recommends you communicate the state’s intention to your state project officer by May 1, 2019. All requests and attachments for the SPIL amendment process should be submitted in accessible PDF formats or as Word documents.  The assigned state project officer will make amendments to the SPIL on behalf of each state.  A revised SPIL will be provided back to the state upon completion, no later than September 29, 2019. 

Make your plans now for the first IL Conference of 2019

Registration to the SILC Congress is now open. This gathering of SILC directors, members and chairs will be held February 25-27 at the Rosen Centre Hotel in Orlando, Florida.  You can register now to get your plans underway. SILC staff and members around the country need their own peer support, and this is where it happens each year. This is a great gathering for SILC staff, council members, and invited presenters.

And as you may already know, there is a lot of activity around a new template for the SPIL, whether your SILC is going to amend or extend your SPIL, and how the new Program Progress Report (PPR, or the former 704 report) will be generated.  ACL plans to attend and the Congress should be a great opportunity to learn the latest from our federal funders. Sessions will also include how-to discussions around the SILC’s duties, including their relationship with the other entities in the IL Network.

Getting out the vote

You already know that, as a recipient of federal funds, you can lobby, but can’t use those federal dollars to lobby. You know that your CIL or SILC can’t support or oppose any candidate for office because of  your tax-free status with the IRS. But did you know you can and should “Get out the vote”?

Voting is something every center should be addressing. I know it is late for some of these but some are coming up next week. These should routinely be a part of your conversations with an individual consumer.

  1. Are you registered to vote? Whatever your party and options, staff should be registered voters, and should encourage consumers to register to vote as well.  How can we be effective advocates and peer models if we don’t even take time to vote? Advocacy has many layers, but if we are disenfranchised because we don’t take time to be a voter, we are missing the very basis of our democracy. If you don’t know HOW people register, find out.  Many centers offer a voter registration card to consumers when they are first interviewed.  It is that important!
  2. How do you make your voting decisions? There are a lot of things on a ballot and not all of them are the people who are arguing so publicly about why you shouldn’t vote for the opposing candidate. A good class for the independent living skill of voting is to go over the voter information packet and make sure the voters have the information they need to make a decision. Some centers invite candidates to a public forum to address questions important to the disability community. Again, you cannot (with federally funded time) encourage a specific vote, but you can share the pros and cons that are published on the issues at hand.
  3. Do you know where to vote? Hopefully your center has helped with voter access to polling places (a service for which many centers get paid by their county). But to encourage your consumers to vote, and to vote yourself, you need to understand your accessibility options. Does your state allow mail-in ballots? That is an easy fix for many for mobility concerns.  It doesn’t give the voter a chance to really participate in voting, to go confidently to the polls and to wear that “I Voted” sticker proudly for the rest of the day. The visible presence of votes with disabilities is a powerful statement.  What are the options for blind voters?
  4. Do you know how to take action when there is a problem? What should voters do if their polling place is inaccessible? Who should they contact, and how can they resolve it? What can be done on election day and what advocacy needs to occur before the next election?
  5. Do you celebrate the process of voting? Not just the candidate, not only the outcomes, but that you are an active part of the process!

Just when you thought you were done with indirect cost rate proposals…

First a word to the wise — when you get anything in the mail that is related to your grant or your compliance with regulations, you need to read it carefully and do what it asks you to do. If what it asks is coming in the future in the form of a report or other information, be sure to put that date on your calendar. It may be the only reminder you will get.

A case in point is your Nonprofit Rate Agreement, which you received from the federal government some time in 2016 when your Indirect Cost Rate Proposal was accepted.  It probably said that your rate was provisional, and that the effective period was two or three years, depending on your local office. And on the second page of your approval, at the end of Section II: SPECIAL REMARKS is a note titled NEXT PROPOSAL DUE DATE. For most of you this date was March 2018, because it is roughly 6 months after your first trial or provisional year of your rate, which for most of you started September 30, 2017. Some of your dates will vary depending on how quickly your proposal was approved.

Then this week some of you received a letter saying that your Indirect Cost Rate Proposal is overdue. They are talking, not about the period of time your current plan is good, but about your responsibility to report back to them on how accurate it was.

Even if you haven’t received that letter yet, go to your approval letter and check that paragraph. If you are already late, and I suspect many of you are, do it as soon as possible.

You are to submit a new Indirect Cost Rate Proposal, this time based on your actual costs for the 2017 fiscal year. Use the same proposal, just update your numbers. Your percentage will very likely be a little off. Don’t worry about that — you have to put in your actual, so if it is off HHS will work with you to correct going forward. But do keep your indirect cost current. As we suggested in training, you want to run your own actuals anyway, because you want these to be accurate figures.

So take a deep breath and dive back in, because we probably will never be done with indirect cost rates.

11 Warning Signs of Gaslighting

Recent events have raised a national conversation about “gaslighting”, and I don’t know about you, but much of what is being said resonated with me, not just as a woman, but as a woman with a disability. I found this article by Stephanie Sarkis, an author with a book that addressed Gaslighting and some of the signs it is happening. First, her definition. She defines gaslighting as “a manipulation tactic used to gain power.” and goes on to say, “And it works too well.” Here is her article:

Gaslighting is a tactic in which a person or entity, in order to gain more power, makes a victim question their reality. It works much better than you may think. Anyone is susceptible to gaslighting, and it is a common technique of abusers, dictators, narcissists, and cult leaders. It is done slowly, so the victim doesn’t realize how much they’ve been brainwashed. For example, in the movie Gaslight (1944), a man manipulates his wife to the point where she thinks she is losing her mind.

In my book Gaslighting: Recognize Manipulative and Emotionally Abusive People – and Break Free I detail how gaslighters typically use the following techniques:

1. They tell blatant lies.

You know it’s an outright lie. Yet they are telling you this lie with a straight face. Why are they so blatant? Because they’re setting up a precedent. Once they tell you a huge lie, you’re not sure if anything they say is true. Keeping you unsteady and off-kilter is the goal.

2. They deny they ever said something, even though you have proof.

You know they said they would do something; you know you heard it. But they out and out deny it. It makes you start questioning your reality—maybe they never said that thing. And the more they do this, the more you question your reality and start accepting theirs.

3. They use what is near and dear to you as ammunition.

They know how important your kids are to you, and they know how important your identity is to you. So those may be one of the first things they attack. If you have kids, they tell you that you should not have had those children. They will tell you’d be a worthy person if only you didn’t have a long list of negative traits. They attack the foundation of your being.

4. They wear you down over time.

This is one of the insidious things about gaslighting—it is done gradually, over time. A lie here, a lie there, a snide comment every so often…and then it starts ramping up. Even the brightest, most self-aware people can be sucked into gaslighting—it is that effective. It’s the “frog in the frying pan” analogy: The heat is turned up slowly, so the frog never realizes what’s happening to it.

5. Their actions do not match their words.

When dealing with a person or entity that gaslights, look at what they are doing rather than what they are saying. What they are saying means nothing; it is just talk. What they are doing is the issue.

6. They throw in positive reinforcement to confuse you.

This person or entity that is cutting you down, telling you that you don’t have value, is now praising you for something you did. This adds an additional sense of uneasiness. You think, “Well maybe they aren’t so bad.” Yes, they are. This is a calculated attempt to keep you off-kilter—and again, to question your reality. Also look at what you were praised for; it is probably something that served the gaslighter.

7. They know confusion weakens people.

Gaslighters know that people like having a sense of stability and normalcy. Their goal is to uproot this and make you constantly question everything. And humans’ natural tendency is to look to the person or entity that will help you feel more stable—and that happens to be the gaslighter.

8. They project.

They are a drug user or a cheater, yet they are constantly accusing you of that. This is done so often that you start trying to defend yourself, and are distracted from the gaslighter’s own behavior.

9. They try to align people against you.

Gaslighters are masters at manipulating and finding the people they know will stand by them no matter what—and they use these people against you. They will make comments such as, “This person knows that you’re not right,” or “This person knows you’re useless too.” Keep in mind it does not mean that these people actually said these things. A gaslighter is a constant liar. When the gaslighter uses this tactic it makes you feel like you don’t know who to trust or turn to—and that leads you right back to the gaslighter. And that’s exactly what they want: Isolation gives them more control.

10. They tell you or others that you are crazy.

This is one of the most effective tools of the gaslighter, because it’s dismissive. The gaslighter knows if they question your sanity, people will not believe you when you tell them the gaslighter is abusive or out-of-control. It’s a master technique.

11. They tell you everyone else is a liar.

By telling you that everyone else (your family, the media) is a liar, it again makes you question your reality. You’ve never known someone with the audacity to do this, so they must be telling the truth, right? No. It’s a manipulation technique. It makes people turn to the gaslighter for the “correct” information—which isn’t correct information at all.

The more you are aware of these techniques, the quicker you can identify them and avoid falling into the gaslighter’s trap.

Book: Gaslighting: Recognize Manipulative and Emotionally Abusive People – and Break Free
Copyright 2017 Sarkis Media: www.stephaniesarkis.com

About the Author

Stephanie Moulton Sarkis, Ph.D., N.C.C., D.C.M.H.S., L.M.H.C., is the author of Gaslighting: Recognize Manipulative and Emotionally Abusive People—and Break Free.