Words do matter!

A branding iron stamped the words “Own It” on a surface.

It isn’t that I never slip. I do. I am of an older generation and sometimes the words of my past and my history come out of my mouth when I don’t intend for them to.

Maybe that is true for you, too. If you are new to IL, or even if you have been a part of IL for a long time, there are terms we need to examine and in some cases exterminate from our vocabulary.

  • One thing that may be a surprise is that we don’t always use people first language. People first language addresses “people with disabilities” rather than “disabled person”, and some of the time that is the right approach. But some of the time we should own our disability and put it first — “the disabled community”, for example.
  •  We don’t repeat the labels of other disability-related organizations. You have heard these labels — “special needs”, “differently abled”, “high functioning”, “low functioning”, “mental age”. Let me speak to that mental age label as an example. First of all, there isn’t anything valuable that comes from that label, that way of categorizing people. Secondly, a person who is 23 who has been labeled as having a “mental age of six”, isn’t 6. She has the life experience of a 23 year old, so nothing useful comes out of the limitations of mental age. CILs do not typically use “differently abled” because, again, we are proud of our disability and our disability community.
  • We avoid terms that show prejudice against a specific disability. We don’t use “mental retardation” or “mental illness”, first of all. People with intellectual disabilities or mental health disabilities cringe when they hear those terms.  These and other terms emphasize a negative stereotype of the people they are describing.
  • Slang that has disability roots is not acceptable. Retarded, crazy, nuts, mental, and more are used in the vernacular to describe all kinds of things unrelated to disability — but these are terms that show a prejudice against some of us with disabilities who have been hurt by such slurs.
  • As people with disabilities we can reclaim some previously negative labels. For example, there is a project supported by Centers for Independent Living called “Crip the Vote”, which encourages people with disabilities to register and to vote. We have reclaimed that negative “crip” for our own.
  • Why do we use the term “consumer” instead of customer or client or other terms? When we created the laws and regulations around Independent Living, we needed a way to describe that our organizations are controlled by us, not by the non-disabled world. “Consumer” was a powerful word related to the rights of the person purchasing goods or services. “Consumer control” is the hallmark of centers, which assures that more than 50% of the board, management and staff of a center are disabled. When it comes to your own language inside your center, you don’t have to make “consumer” a label for the people you serve. You can just call them people. But the power of “consumer control” makes “consumer” a term we want to claim as our own.

How do we count Information and Referral services?


The word REPORT is written in red over a white puzzle with missing pieces.

Information and Referral is the one core service that you can provide without setting up a Consumer Service Record for the individual. That doesn’t mean that you won’t need to keep information and follow up with the person. The strongest centers keep some kind of log of the caller, the area of concern, and the information needed to follow up and see if the individual was able to act on the information or referral.

The best practice we see treats this first contact as the door to offering additional services or connecting the person with the disability community or both.

These individual contacts where the center staff responds to someone who is asking a question can come through social media or your website and not just by telephone or drop-ins.  But it is only counted as an I & R service if you provide information to an individual in response to a request.

Centers have not been consistent in how I & Rs are counted in the annual reports to ACL/ILA. Here are some pointers for tracking I & Rs as opposed to outreach efforts.

  • A phone call requesting specific information, which is responded to, is an I & R.
  • A text message requesting specific information, which is responded to, is an I & R.
  • A phone message that is not returned does not count as an I & R.
  • A “contact us” note on your website, if you respond to it, is an I & R.
  • Hits to your website are outreach, but are not I & R.
  • If someone contacts you with a message from Facebook and you respond by providing information or referral, it is an I & R.
  • Facebook “likes” “follow” and “share” are outreach, but are not I & R.

For you to count an activity as I & R, you must actually provide a specific individual with information or a referral.

Do life goals and dreams need to be realistic?

A chalkboard with a circle around MY GOALS and arrows pointing to colorful sticky notes labled Artistic, Attitude, Career, Education, Family, Public Service, Pleasure, Physical, FInancial

A few weeks ago I got to attend a great on-location training by IL-Net called “Get to the Core of It: Integrating CIL Core Services for a Holistic Consumer Experience”.  (The captioned video will be posted soon.) All of the presenters are very experienced and provided very practical tips for implementing some best practices in direct services.

I was especially struck by some things said by Charlie Walters from ABLE South Carolina. He discussed setting a tone with the consumer as you begin the conversation about their goals. Here are some of his points:

  • Assist the consumer in identifying their strengths, resources, and potential barriers that may impact the person’s ability to function independently in the community.
  • Establish trust, and a sense of “us” addressing barriers since we both have a disability.
  • Empower and encourage the consumer from the outset by informing him or her about the importance of this process being consumer-driven and directed.
  • Utilize backwards planning, planning with a long-term vision and setting goals that will lead to that vision. When you start at the individual’s vision for the life they want, radical as that concept is, you are learning about their dreams.
  • Goals are worked out with the individual based on this vision and the effort they are willing to exert to get there.
  • Barriers to those goals can be part of the planning process — you need to sort out any functional limitations of the individual’s disability and the impact the disability has on his or her ability to function independently, and how to accommodate them.

Another presenter, Amina Donna Kruck, Talked about starting with the heart’s desire. It is not the center’s job to determine if these goals are “realistic”. It is our role to assist the person in breaking down the components of what they want most, their goal and its barriers so that the individual can see the path to their dreams. They may not know about accommodations that will assist with those functional limitations. It might be useful if to introduce a peer who has achieved a similar goal.

So the next time someone focuses on whether a dream is realistic, think about these processes for supporting the individual in achieving their dreams.  It is not our job to judge how realistic a goal is.  Instead our role is to assist the person in identifying steps they want to complete toward that dream.


What costs are “modified” in the 10% de minimus?

When you elect to apply the 10% de minimus rate rather than develop an indirect cost rate proposal, you are not required to submit a proposal for approval. There are, though, some assumptions about this that you need to know. 

The regulations around this state that, for the 10%, the “cost pool and base for distribution” for the indirect cost is  divided by modified total direct costs.

So what are these modified direct costs? From Uniform Guidance: 

Modified total direct costs, consisting all direct salaries and wages, applicable fringe benefits, materials and supplies, services, travel and up to the first $25,000 of each subaward (regardless of the period of performance of the subawards under the award). Modified total direct costs what exclude equipment, capital expenditures, charges for patient care, rental costs, tuition remission, scholarships and fellowships, participant support costs and the portion of each subaward in excess of $25,000. Other items may only be excluded when necessary to avoid a serious inequity in the distributions of indirect costs, and with the approval of the cognizant agency for indirect costs.

Some centers chose the 10% because they didn’t feel comfortable with the more complex proposals, policies and application of an indirect cost rate. Hopefully if you chose the 10%, you understand that this has a specific method for applying that 10% in keeping with these requirements

Are your paying your consumer as an employee or a contractor?


The center has some odd jobs around the place — lawn mowing, cleaning, maybe web development or support of the Facebook page. Some centers pay consumers as peer support mentors. Is it okay to hire a consumer to do this? And if so, would the consumer be an employee or a contractor?

First let’s consider the issue of paying consumers to work for the center. Is this allowable? Yes, either as a contractor or as an employee. It is  required that more than half of our staff have disabilities — but if this is a part time person you don’t get to say you now have more than 50% employees with disabilities by adding part time people in as full time. You need to use the full time equivalent as you figure this.

Secondly, you need to pay the individual the going rate for the job they are doing. You may need to ask around or get bids regarding that. You definitely DO NOT want to arrange sub-minimum wages or even sub-par wages for any of your employees.

The next question is, is this an employee? If so, you need to follow the organization’s hiring practices as well as what the law requires. Usually this means that the position is in the budget and organizational chart, that there is a job description, that the organization opened the job up to interested applicants, that the person received new staff orientation, and that they completed an application, a W2 and any other documents staff sign (like receipt of policies or the code of ethics). And that the center withholds taxes and matches social security. If they are your employee your probably also provide their tools, materials, and require a certain schedule. They may be eligible for vacation, leave or other benefits depending on your policy. You will also need to evaluate their performance — even if they are part time — at least once a year.

Is the individual a contractor? Contractors usually set their own hours and use their own tools and equipment. Usually they are also covered by their own insurance rather than yours. Again, the contract should be in the budget under contract services, and there should be some sort of written documentation of the amount to be paid by the project or the hour. This can be fairly informal — hand written, signing acceptance of a proposal, email, etc. Then there should be a vendor file for the contract, and it should include a W9 and the proposal, along with any payment documentation.

One or the other of these would apply to anyone doing work for your center, unless they are an unpaid volunteer (a topic for another day). All personnel paid through the grant will fall into one or the other of these categories, which should be consistent and clear. If they are an employee you can’t suddenly decide that this month you will contract with them instead.

As to whether these types of job are allowable — it is permissible to use federal funds for these kinds of activities, yes, but it must be included in the approved budget. If you need to go outside the approved budget for contract services, that is not allowed without a budget revision. If you are making the individuals employees but they are temporary or part time, that is unusual but allowed; but your board should know about it in advance. Do you have unspent money in your personnel budget? Typically hiring for other positions is allowed as long as it is in keeping with the organization’s policies — typically board approval for a new organizational chart and job description — and justification that the position advances the purpose of the grant.

So are T-shirts an allowable cost?

Question from the DSE:  If T-shirts are purchased for the attendees of a youth event (11 t-shirts altogether) and they aren’t souvenirs, are they allowable?  I’m looking at uniform guidance trying to decide, I initially denied it but rethinking things.

Answer: My typical answer to all questions related to allowability is, “It depends.” This is a great example of how the use of the item, and not the item itself, determines its category and therefore its allowability.  Promo giveaways and souvenirs are not typically allowed. Advertising (except for job openings) is not typically allowed. However, outreach is allowed (and required, actually, to your identified unserved or underserved groups). As a result the expenses that are considered to be essential to accomplishing the tasks of the grant project are allowable.  An argument can be made that T-shirts are essential when a group from around the state gets together for an outreach or advocacy event, for example. That way the participants know each other to be part of the same group and the strength in the numbers of the advocates has an impact. Giveaways that draw people to a table where they sign in can become the basis for outreach to youth. Pens with the center’s name and number on them and business cards and brochures can all be classified as outreach materials.

If the CIL can justify that the purchase was essential in outreach, advocacy or some other project of its grant, it should be allowed.

Please note the word essential. Every purchase you make with federal grant dollars is required to be reasonable (a good price), necessary, allowable and allocatable.

For your reference, the regulations contain a list of selected items of cost that may not be allowable. They are alphabetical and you can find them following the intro here: https://ecfr.io/Title-45/pt45.1.75#se45.1.75_1420

Do notice that language makes a difference. For example, Centers are required, and Statewide Independent Living Councils are allowed (if addressed in SPIL) to do resource development.  Like outreach, if you categorize an expense as advertising or public relations or fund raising then the expense may be unallowable. If you categorize it properly and show it is reasonable and necessary as resource development, it should be alllowed.


Do other states or federal departments help support Centers?

There are a number of different ways that centers are funded through their states or through other federal funds.

  • Some states provide state general funds. This usually requires the passage of a bill or something in the state budget designated to go to centers. States that have been successful in securing these funds have been able to show that the Centers are cost effective and provide important outcomes for people with disabilities.
  • There are several sources of funds that sometimes go to centers through their department of rehabilitation. These may include social security reimbursement funds, Innovation and Expansion funds and contracts for employment or youth transition services through Title I of the Rehab Act.
  • Some centers have the grant from HUD for administering existing housing vouchers, especially in rural areas where there isn’t a powerful housing council at the city or county level.
  • Americorp volunteers can assist with the development of anti-poverty efforts, including building a curriculum for financial literacy for consumers, for example. These are short term projects, so whatever you desire for them to do must be completed and leave a lasting outcome after their service ends. A nice plus — if someone is hired under Americorp their stipend doesn’t count against benefits, so it can be a nice transition into the work place for some people with disabilities.
  • Some cities and counties hire centers to provide driver training to their transportation people,  marking wheelchairs re: tie downs for transportation, etc.
  • Accessibility is often an area of strength. Certifying access of public places or  assistance with checking accessibility of polling places, for example, can be paid work.

I know you want more base funding, but centers often end of putting a package of little things together to make it work. You can find more on marketing and giving at http://www.ilru.org/topics/public-relations-marketing

When does the CIL representative to the SILC have a conflict of interest?

The regulations require that every SILC has one member that is an Executive Director of a CIL and is chosen by the CILs in the state. Because they are selected to represent the centers, it is not a conflict of interest when they express the needs, questions or concerns that all centers have.

It becomes a conflict of interest if the matter before the council favors only the center that the rep is from. When this happens, if the reg continues to have input, that is unfair to the other CILs.

The SILC should have conflict of interest policy and procedures. We recommend that, when there is a conflict or a perceived conflict, the person with the conflict discloses it, and then is not involved in the discussion or voting that follows (recuses themselves from the discussion and vote). Personally I feel it is appropriate for them to leave the room while the discussion and vote take place, so that council members don’t have the added pressure of that individual’s scrutiny during the motion, discussion and vote. Since the SILC meetings are open and public, this isn’t really something that you can require, but shows a strong ethical standard if members do this voluntarily.

I have been asked if the CIL rep can also chair the council. They council elects its officers from among its voting membership, so the CIL rep would be eligible to serve as an officer. Personally, though, I advice against having the CIL rep as the chair of the council. In some ways being chair limits the ability of the individual to represent the Centers. The chair can’t make a motion and doesn’t get to vote except in case of a tie. Even in the discussion the chair’s role is typically limited to what is needed to hear all the other members, to entertain motions, and to oversee the vote. A CIL rep who is free to make motions and vote is more a representative of the Centers than one who serves as chair.

Your ex officio members should not make motions or vote. They are there to provide information that is conducive to the SILC’s partnerships with other state-wide entities. Since they are not voting members, they should not serve as officers. They may, however, be members of committees, or even chair a committee if the council chair feels that is appropriate.

Your SILC is preparing policies and procedures (or updating them) related to the SILC Indicators. Be sure that you address Conflict of Interest in these policies.

How many ex officio members should a SILC have?

First, do note that the SILC Assurances have requirements around appointments, including that the SILC regularly (not less than annually) provides the appointing authority recommendations for eligible appointments; and the Indicators require that the SILC have written policies and procedures that must include a method for recruiting members, reviewing applications and regularly providing recommendations for eligible appointments to the appointing authority. There is nothing in either of these statements that describes these items as applying only to voting members, so it follows that ex officio members are also included in this.

Here is what the regs say:

§1329.14   Establishment of a SILC.

(a) To be eligible to receive assistance under this part, each State shall establish and maintain a SILC that meets the requirements of section 705 of the Act, including composition and appointment of members.

(b) The SILC shall not be established as an entity within a State agency, including the DSE. The SILC shall be independent of and autonomous from the DSE and all other State agencies.

And here is what the Rehab Act says:
(a) ESTABLISHMENT.—To be eligible to receive financial assistance under this chapter, each State shall establish and maintain a Statewide Independent Living Council (referred to in this section as the ‘‘Council’’). The Council shall not be established as an entity within a State agency.
APPOINTMENT.—Members of the Council shall be appointed by the Governor or, in the case of a State that, under State law, vests authority for the administration of the activities carried out under this Act in an entity other than the Governor (such as one or more houses of the State legislature or an independent board), the chief officer of that entity. The appointing authority shall select members after soliciting recommendations from representatives of organizations representing a broad range of individuals with disabilities and organizations interested in individuals with disabilities.

COMPOSITION.—The Council shall include—
(A) among its voting members, at least 1 director of a center for independent living chosen by the directors of centers for independent living within the State;
(B) among its voting members, for a State in which 1 or more centers for independent living are run by, or in conjunction with, the governing bodies of American Indian tribes located on Federal or State reservations, at least 1 representative of the directors of such centers; and
(C) as ex officio, nonvoting members, a representative of the designated State entity, and representatives from State agencies that provide services for individuals with disabilities.

As you can see, the law seems to indicate that the ex officio members are appointed in the same way as voting members — by the governor or other appointing entity if you have a law for that. However, it is quite clear from the indicators/assurances that the SILC is to pass on nominations to the governor for consideration, and the requirement for “representatives from State agencies that provide services for individuals with disabilities” does not say that representatives of ALL State agencies that provide services for individuals with disabilities must be included. It seems to me that the SILC can suggest ones that seem most advantageous to the SILC, keeping in mind that consumer control is essential.  If other appointments have not taken place to supply more than 50% people with disabilities who do not work for a CIL or the state, then it may not be possible to include all the state agencies; I would certainly not require them in executive order or bylaws as required. Only require the representative from the DSE and make the others permitted but not required, maybe? Or perhaps include two, as the term “representatives” in the language is plural.

One more thought.  Often the state employees are more confident in expressing themselves than some of your less experienced members. Do not allow an ex officio member to dominate the conversation. I mentioned at the SILC Congress that there was a state I worked with that was deciding which of the two state agencies to go with, back when they were developing the most recent SPIL. They asked the ex officios if they would be willing to leave the room while this was discussed. They did — and it was as if the entire council was new. Suddenly everyone felt more free to talk and they discussed the decision and how to roll it out. That gave me a glimpse of the fact that ex officio members can stifle the ability of the SILC to autonomously do its work. Keep this in mind and make sure they don’t overwhelm the other council members with their professional opinions. The same thing can happen with center staff who serve on the SILC. Your consumer-controlled, autonomous council must not be subject to the DSE or other state employees or to the centers, who are a part of your group. That is why 51% of the council and of the voting members must be people with disabilities who don’t work for the state or for a Center.

How consistent does my indirect cost rate need to be?

word indirect on a paper torn between in and direct

A DSE called during an on-site review of a center to clarify what a center was doing with its indirect costs. “They are claiming the 10% di minimus.” Okay, so far so good. “But if they have any costs over that amount they are throwing it into their state grant for payment.”  Oh-oh. Not so good.

The whole purpose of allocation, however your center does it, is to share the indirect costs in a fair, equitable way. Each of your grants, or cost objectives, should bear the costs in proportion to what the grant brings to you. It is sometimes okay to combine funding sources (if they have the same purpose, serve the same people, etc.) and apply the percentage to those sources combined, in the same percentage. It is not, however, okay to give one of your funding sources the excess amounts for something your rate doesn’t cover.

When centers fell under RSA, most of us used a cost allocation plan to allocate shared, administrative and overhead costs. That plan identified those shared costs, and then described the methodology for calculating the amount to go to each cost objective, or funding source.

When Centers moved over to the Independent Living Administration/ACL/HHS they asked us to develop an indirect cost rate. We have some resources on our website about how to do this. We have recommended against the 10% di minimus (meaning you can charge 10% and aren’t required to have an approved rate) because we found that it would not typically meet the needs of a center to pay their indirect costs. While it is somewhat more complicated, actually calculating your indirect costs and then sharing them across your funding sources is the most fair way for shared costs to be shared.

These are costs like your bathrooms, lobby, hallways and conference room and the utilities that go with them. Your administrative staff, especially the executive director, human resources and fiscal staff, do work that benefits all of your programs. You need to figure out how those programs share those costs.

There are a couple of other options for managing these costs. If you only have one funding source you might not need a methodology for sharing indirect costs, since all would be direct to that one source. (This seems short-sighted, though, because as you do your required resource development your funding sources should expand.)

There are a few centers whose fund accounting is very precise and which charge all costs as direct. They are still required to be able to show how the allocation of shared costs if fair, but each expense is shared at the time the expense is incurred, based on their internal policies.

The point is, each grant should pay its fair share of indirect costs and no more.