Does it matter what I call you?

I recently discovered a feminist speech by an actor I admire, Dr. Mayim Bialik, also known as Dr. Amy Farrah-Fowler on The Big Bang Theory. It is an awesome speech, delivered with a touch of humor. She even brings in a little science, with the Sapir-Whorf hypothesis (a theory developed by Edward Sapir and Benjamin Lee Whorf that states that the structure of a language determines or greatly influences the modes of thought and behavior characteristic of the culture in which it is spoken.) View her captioned video here, then let’s apply what she says to people with disabilities.

We talk about intersectionality between the Disability Rights Movement and other rights movements in our culture, including Civil Rights for people of all ethnicities, the Women’s Movement, the LGBTQ Movement, and others. Sometimes we go beyond rights and talk about justice. We can learn from people who represent one of these other points of view — and often, we ourselves belong to more than one group of people for whom rights, respect and value are in question by others in society. We can relate. And we can learn from each other.

Bialik said, “We have to stop calling women ‘girls’. Why? Because it matters what we call people. Language matters. Words have meaning. And the way we use words changes the way we frame things in our mind….Words have an impact on our sub-conscious.”

Here are some of Bialik’s observations about language and respect, mixed in with some of my own.

  • How can you tell the difference between a girl and a woman? If she has a high school diploma, a child, a degree, a loan or a mortgage, you can be pretty certain she’s a woman. Calling her a girl is not just disrespectful, it is demeaning and implies she is less than an adult. People with disabilities are often treated as children, too. We need to stop calling women, girls and adults with disabilities, kids.
  • Bialik gives a number of examples of ways to  interrupt demeaning language that are somewhat polite, and delivered with a smile, if you want to take that approach to advocating for adult and respectful language.
  • Sometimes the disrespectful language has an unintended but negative impact on the treatment of individuals. I was with a friend of mine in a restaurant when someone came up to him, noted his wheelchair, and asked if he “got out” often. I wasn’t sure whether she meant out of a hospital (post-injury maybe?) or out into the public, but when she patted him on the head I was pretty sure it was the latter. (He directs a large, effective center, btw.)
  • Some demeaning language is disability specific, and while most of us are sensitive to language about our own disability, we may not be as good at respectful language around other disabilities. I am afraid I have heard people who are part of the disability rights/independent living movement call others retarded or crazy. If you have a mental health disability, or a developmental disability, you may have even more to say about respectful language and I hope you will comment here.
  • Remember that the way things are is not the way they must be. Let’s not take on the biases and judgments about others that have been in place since historical times when women — and people with disabilities — weren’t even allowed into the public sphere.

As Dr. Bialik says, it is up to us to change this narrative. Our active advocacy for the respect and value for all people is a key part of our independent living philosophy.

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What is your CIL’s Environment?

Today’s New Century Blog (you should subscribe if you haven’t) cited a number of references on creating an environment of innovation. I began to think about how very different centers can be from each other in their actual offices and locations, and how the setting emerges from the mission and shapes future innovation.

Over the past 38 years I have visited quite a few Centers. Their locations varied, from the Executive Director’s house to store-front office space to large social spaces for the disability community to gather together and do their work. Here are some things to think about related to your Center’s location.

  • Is your office space part of your image, marketing and branding? How visible are you and does your space reflect your mission? Are your name and signage clear and do they communicate to the larger community? If not, is it time to review your name, logo and location in relation to your mission? Is your space accessible to people of any disability? Or are you mostly invisible, hidden away in a back corner out of sight? (Dare I ask if this is an echo of society putting people with disabilities out of sight for so many years?)
  • Does the arrangement of your space — offices, open cubicles, meeting spaces, break areas — give your staff and consumers a chance to interact for peer support, and also to talk about ideas for reaching the disability community in your area? Innovation often emerges from the natural conversations as you address whatever came up that day. Encourage these conversations both for peer support and for the growth of the Center.
  • Are you able to take good ideas from discussion to action? In her November 30 blog article, Three Strategies for Creating a Culture of Everyday, Everywhere Experimentation Polly LaBarre said,”Take a page from the art of improv, where players act in order to discover what comes next. It’s ready, fire, aim—the small experiments of responding to fellow players’ leads, going out on a limb, recovering from a flub, picking up on an unformed idea, are what create the scene. At Stanford’s Institute of Design, known as the d. school, they call this “do to think.” In other words, get your solution out of the isolation of your head or your team room and into a context where you can start learning from the real world.”
  • If you are emphasizing a community based model, how does your space fit that model? Some Centers are intentionally office spaces where staff can touch base, but much of their work is done in the community, in the homes with people seeking their independent lifestyle.  If you are using this kind of model there are some things to consider. Are your staff able to access homes or are many of them inaccessible? Are conversations with consumers confidential or do they always take place in front of family at home or in front of the community at Starbucks? How does peer support take place? How do you mobilize the disability community, and where can you bring them together?

I am working with two centers, which will remain nameless, that are in the process of moving in opposite directions in this decision about space. One has opted for smaller space and home based services, leaving a larger office setting. The other is adding meeting spaces and bringing staff back into locations and spaces where the disability community can meet with them.  For both, this change in spaces is the next logical step as they implement their mission. Both are thoughtful and intentional about these decisions.

That is the bottom line — to be thoughtful ad intentional about your location, the structure of your offices, the potential for growth or collaborations.

Social Media and Your Center

People often tout Social Media as the primary way to connect with consumers, funders and other stakeholders in your Center. Here are a few examples of social media and how you might use them:

Your own website: Most centers maintain a website with basic information about your center and its services. Often this includes key staff and contact information. More and more, before they pick up a phone to talk with you, people check you out on line. Make sure your website is clear about who you are and what you do. Make sure it is accessible. Make sure that you are communicating your message to the disability community around you. Put the address on business cards, stationery and brochures to help people find you. Some centers also use their site as a Portal to Board or Staff information.

Facebook: An online social media and social networking service.  You can create one or more pages for your Center to carry on a conversation with consumers that is either general or focuses on specific elements of your services. You may want a separate page for youth, for example, and feature a calendar of their events along with posts that youths with disabilities are interested in. People can like, share and follow your page to see your posts in their feed.

LinkedIn: A professional network. You choose/invite your contacts and can post professional articles or communicate with your contacts individually. LinkedIn has offices in 30 cities around the world. LinkedIn operates the world’s largest professional network on the Internet with more than 467 million members in over 200 countries and territories.

Snapchat: An image messaging and multimedia mobile application. One of the principal concepts of Snapchat is that pictures and messages are only available for a short time before they become inaccessible. A center using this service would need to examine the accessibility of any images used.

Twitter: An online news and social networking service where users post and interact with messages, “tweets,” restricted to 140 characters. Registered users can post tweets, links and images. You collect followers who receive your tweets, and may choose to follow or retweet the posts of others.

A WordPress, My Space or other blog: A blog (a truncation of the expression weblog) is a discussion or informational website published on the World Wide Web consisting of discrete, often informal diary-style text entries (“posts”). Posts are typically displayed in reverse chronological order, so that the most recent post appears first, at the top of the web page. You are reading a blog maintained by Paula McElwee as part of the IL-Net project for technical assistance. Blogs are typically written by an individual and are somewhat editorial in nature.

You Tube: A video posting site where you can upload short videos about specific topics. These should be captioned for accessibility. Some Centers post about accessibility, independent living skills, history and philosophy of Independent Living and other how-to or historical videos for the field. Some interview people and post the peer support videos of individual experiences.

Google +: This brand-specific option combines your own page about your CIL with videos, invitation lists, calendars, Google describes this as  “a social layer across all of Google’s services”.

Flickr: A popular website for users to share and embed personal photographs, and effectively an online community, the service is widely used by photo researchers and by bloggers to host images that they embed in blogs and social media.

Pinterest: A photo sharing site where you post your own images or re-post others, using topical boards to categorize them. These images should be described for accessibility.

Soundcloud: A post for podcasts, other audio files. You will want to assure you can caption, or also post a transcription.

Don’t just assign your Facebook page to a youth and let that person do their thing. You want a cohesive message, and that means someone needs to assure that all social media is appropriate. This may, at times, mean editing out a comment that is counter to your mission. Whatever social media you decide to use, make sure that it is:

  • Secure
  • Approved
  • Accessible
  • Provides a consistent message
  • Active and up to date

Thanks to Wikipedia for many of these descriptions.

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What is in a name?

If your center staff and board have worked on your mission and vision lately, you probably had this conversation. “The community doesn’t understand what a Center for Independent Living is. They want to drop off their elderly relative and have them move in.”  Sometimes the name of your center is a barrier to accomplishing that mission and vision. To communicate that Living is about life, and is non-residential, has been a challenge to most of us.

On the other hand Center for Independent Living was the name of that early center still going strong in Berkeley CA and has an important place in our history and our philosophy.

What to do? Many Centers around the country decided to change their names. They have chosen other words to express their philosophy. Some call their organization an Empowerment Center or a Resource Center or Disability Rights Center. Others insert words like Ability or Access or Action into their name.

How important is the right name? Business experts will tell you it is vital, that your name is your BRAND. If you have a name that is too long, too muddy or too trite that name will continue to hinder how your community thinks of you.  The right name can enhance your image and outreach.

If you are considering a new name for your Center, avoid these mistakes:

  • Trying to fit in everything you do. A name like, “Independent Living Skills Training and Advocacy” for example, tries to say too much and fails to communicate at all.
  • Describing your service area. Some centers use phrases that describe where they are located, like Panhandle or South Valley or Northwest or actually name the counties. (I personally have made this mistake more than once.) Think about it — how many other businesses in your same area use that same tired phrase? Look it up. This may distinguish you among your peers in the state, but it doesn’t help your outreach in your community because you don’t stand out.
  • Involving too many people. Naming an organization with the full board, consumers and staff involved in brainstorming is fine. Hold a contest to get suggestions. Engage your community in why you are looking for a change and ask them for their ideas. At the end of the day, though, you don’t want a name that was developed by a committee. You want something that is clear, concise, and meaningful. A smaller group should take the submitted ideas and develop two or three you really love, then take those back to the board for approval.
  • Rolling out the new name in a sloppy, unplanned way. We will talk a little more about branding in a later post, but do your research and planning, then with great fanfare, roll out the new name with a splash — new stationary, new business cards, new signage, new website domain and look, new logo. In other words, pick a date and make sure that your name is effective that day, all across your ways of communicating. (Of course you have already checked that a domain name is available, that the corporate name is available if you plan to make an official change, before you decide on the name.)

Don’t be afraid to change your name if a change will improve your image and outreach. Take your time and do it right. But don’t feel like you MUST make a change. Assess how well you are known in your community now, and whether a change will increase community support and outreach.

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What does your IRS 990 say about you?

February 19, 2017 the Denver Post, reminded Rocky Mountain readers that “Every year, nonprofit organizations must submit their informational returns to the IRS in the form of a 990 or 990-EZ. Although these forms are sent to the IRS, they are also available to the public on a number of websites, including GuideStar. Additionally, nonprofits are required to provide them upon request. Given the competitive funding environment, philanthropic organizations should see the 990 as an opportunity to promote their work to potential donors.”

Bruce DeBoskey, a lawyer and financial planner, recently described the Form 990 in the Denver Post as a “treasure trove” of information for potential donors. This is particularly true when donors examine it over multiple years. In his excellent article, DeBoskey identified 16 areas of interest:

  • Current tax status
  • Mission statement
  • Revenue received and from what sources
  • Internal expenses, including program, accounting, management and fundraising expenses
  • External fundraising expenses
  • Legal and accounting expenses
  • Net assets and cash reserves
  • Investments
  • Use of program-related investments
  • Identity (and salaries) of board members
  • Salaries of key employees
  • Key programs as well as expenses associated with each program
  • Significant changes in financial condition
  • Conflicts of interest among professional and staff leadership
  • Important governance policies and practices that demonstrate use of best practices in nonprofit management
  • Lobbying activities

Unfortunately, because an accountant often completes this on their behalf, many non-profits fail to check it over before it is submitted. Make sure your 990 is current and accurate,  reviewed and proofread internally like any other Public Relations document coming out of your Center, because the document IS public and sometimes is the first thing a potential donor checks before making a giving decision.

The 990 of other organizations may also be of interest to you. If another non-profit in your community is your competitor, you are wise to do your research and learn more about them.  Remember that foundations also fill out this form, and theirs is public as well. If you want to know their mission, and their key personnel and board members, you can easily pull up their 990 to decide if an application for funds from your CIL to that foundation is appropriate.

Thank you to Non-Profit Quarterly for this reference and content.

Seven Red Flags on IRS Form 990

IRS Form 990 is a tax return for organizations that are exempt from Income Tax.  Tax-exempt organizations, nonexempt charitable trusts, and section 527 political organizations file this form to provide the IRS with the information required by section 6033. The first thing you need to remember is that your non-profit MUST submit this form. I am aware of a center that failed to submit it for several years — and was in jeopardy of losing its non-profit status as a result.

Most non-profits, and very likely your Center or SILC, have their accountant complete the IRS form  990 as they finish the review of the financial statements of the organization, sometimes as a part of the financial statement audit or sometimes as a separate function. Did you know you can see the 990s of every non-profit in the country at Guidestar?  The database can be searched for red flags by any whistle-blower, donor, regulator or reporter, you want to make sure your 990 is accurate, and you especially want to assure that you are aware if you are raising any red flags in your submission of this form. Executive directors and board members shouldn’t rubber stamp the 990, but should read the very revealing information included on the form before signing and submitting it. Here are some key areas to consider.

  • Mission and Program Service Accomplishment. This is where you tell your story. Take advantage of the opportunity to show you are serious about your non-profit status and can show that you are a legitimate non-profit. You may want to take some of the highlights from your Program Performance Report, including statistics on numbers served and outcomes from your grants or plans. (Read the instructions to see what the IRS expects to see here.)
  • Part IV questions help you determine which schedules you need to complete and attach. Especially notice Schedule L, the transactions with interested persons. A “disqualified person” is someone who is in a position to exert control over the organization, and therefore financial transactions with them or their relatives raise a red flag related to conflicts of interest. If you say yes, provide the explanation in Part V. If you say yes, bend over backwards to prove that the amount spent is reasonable, at a fair market cost or below market cost, and you should explain in Part V.
  • Part V asks if you are telling donors if any part of the donation is not tax deductible, typically related to reducing the value of the donation by the value of a thank you gift.
  • Did the organization become aware during the year of a significant diversion of the organization’s assets? This would be marked yes if there is embezzlement, theft, or misuse of equipment or other assets. Regulators are very interested in this information. Guidestar actually provides a report to the FBI of any non-profits who mark this question “yes”. Be sure to explain on Schedule O, including how much money was involved, whether there was an insurance claim, how you reported it to authorities, and what new procedures you put in place to keep it from happening again. Do not include the name of the embezzler in the explanation.
  • Was the Form 990 presented to and reviewed by the Board of Directors before filing? A “no” answer is a red flag.
  • Do you have written policies around conflict of interest, whistleblower, document retention and document destruction policies? A “no” is a red flag. (They can’t require these policies, but they will use the answers as one element to determine who might be audited.)
  • Do you use best practices to determine employee salaries? A “no” is a red flag.

Thank you to Guidestar for much of this information. Join their conversation at #990redflags on Twitter.

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Help! We can’t get the governor to appoint SILC members!

Is your Statewide Independent Living Council “fully constituted”? In other words, do you have a full complement of members as required in your bylaws or other organizational documents?

Does the makeup of your council meet requirements? A majority — more than 51% of council members must be people with disabilities who are not employed by either the State (in any department or capacity) or by a Center for Independent Living?

Does your makeup reflect the diversity of your state? Regions, ethnicity, and types of disabilities should be as diverse as possible. Populations identified as underserved should be represented.

Is everyone removed from the council whose two three-year-terms have expired? (These are specified in the law.) We have been informed that the Act and the Federal regulations for SILCs do not allow for the extension of terms, whatever the Governor’s appointment office might say.

If you answered “no” to any of these questions, your council is at risk of not being fully constituted.

Consider these strategies to help assure that appointments are made on a timely basis.

  • Utilize an application process and work with the statewide network to get the applications into the hands of people who represent the areas where you are lacking. Current staff, officers and council members are the most likely to know people served who might be interested in and familiar with independent living.
  • Meet with the governor’s appointment office and present a clear picture of what vacancies need to be filled.
  • Communicate with the governor’s office that if the SILC is determined to not be fully constituted, the state risks a delay in federal funds flowing to the DSE and to centers directly (Part B and Part C funds). These funds may be in jeopardy and funds may not be released until the State takes the necessary steps to timely appoint qualified individuals to all SILC vacancies. This ensures the SILC is properly constituted and capable of performing its mandated duties.
  • Consider a policy, agreed to by the governor’s appointment office, for the governor to delegate the authority to fill a vacancy for  second term for  SILC members originally appointed by the governor.
  • Request that your program officer from the Administration for Community Living/Independent Living Administration communicate any concerns to the governor’s appointment office.

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Peer support is for you, too

Sometimes the job is difficult, frustrating. There is so much to learn and know. How can you keep up?

Did you know that we do group technical assistance calls every month? If you aren’t on our mailing list for these, you can sign up at the very bottom left of our webpage. If you will need real time captioning to participate in the call, please contact Sharon Finney no later than Noon the week before the call at or 713.797.7129. Here is a summary of those calls.

Middle Manager call.(Assistant Directors, Program Managers or Middle Managers)

If you are an Assistant Director, Program Manager or other middle manager of a Center for Independent Living, we have our next monthly Technical Assistance call on February 9, 2017 from 3:00 – 3:30 p.m. Eastern, and then will join the ACL call regarding on-line reporting. Usually our call is an hour, but this most pressing issue will require us to hop on another call to get some new information from the Independent Living Administration folks.

I facilitate the calls on the second Thursday of the month at 3:00 Eastern Time, and the call in number is 888.652.4360 using access code is 1891#. Set that hour each month aside in your calendar, and make notes of things you’d like to discuss. At the end of each call we set the topic for the next month.
New Executive Director call. (Two years or less in the job.)
Whether or not you have management experience or experience in Independent Living, you will find this call useful. We will discuss new regulations, indicators of compliance and guidance as it emerges, and we will discuss whatever item is stumping you — finding good board members, helping your board chair facilitate the meetings, making sure your staff are grounded in Independent Living, financial rules, policies and procedures, and more. The group shares with each other, and I share samples and tips from my experience and other more experienced directors.
I facilitate the calls on the second Monday of the month at 3:00 Eastern Time, and the call in number is 888.652.4360 using access code is 1891#. Set that hour each month aside in your calendar, and make notes of things you’d like to discuss. At the end of each call we set the topic for the next month.
Statewide Independent Living Council (SILC) Members and Staff call.
Join us for February’s SILCSpeak on the first Thursday, February 2nd at 3:00 Eastern for a discussion on recruiting and training of SILC members.
  • How do we find good potential SILC members to apply for the Council?
  • What strategies can we use to facilitate the Governor’s appointments to the SILC?
  • What training and orientation should we provide to new SILC members?
  • What ongoing support should we have for council members to retain them in their position/encourage them to meaningfully participate?
To join on February 2 and the first Thursday of every month, dial 1.888.652.4360 using code 9205763 and press #.
Mary Olson from the Association of Programs for Rural Independent Living (APRIL) and Ann McDaniel from the West Virginia Statewide Independent Living Council (WVSILC) facilitate with me.
Topical conversations on Independent Living subjects.
These topical conversations are one of the APRIL projects within IL-Net. The December conversation, for example, was around how Centers support people with psychiatric disabilities. Disasters, veterans, youth and transportation are upcoming topics. Check out the schedule or review the archives on APRIL’s website.
On-demand email and phone support.
You can contact me by email for individualized technical assistance, which can be by phone or email, and sometimes even in person. Typically there is no charge for this support. Contact me at
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Are you ready for that emergency?

It’s that time of year again. There are floods, landslide, road washouts and more in California. Weather events happen all across the country. Blizzards. Earthquakes. Tornadoes. Ice storms. Recent fires in the Tennessee towns of Gatlinburg and Pigeon Forge burned at the end of November. Many victims had mere minutes to evacuate, escaping with only the clothes they were wearing at the time.

What is your center, or your statewide network, doing to plan for such an emergency in your back yard? There are a number of states that have taken action. Here are some examples of what you might do to prepare.

  • Work with local authorities to compile key emergency information to provide to all your consumers.
  • Make sure that people with disabilities are included on the planning boards and commissions in your community, and that all plans include the needs of people with disabilities.
  • Train first responders in the rescue of people with disability.
  • Assure there is a local shelter that is accessible.
  • Assist individual consumers in developing emergency plans and “go bags”.

The Federal Emergency Management Agency (FEMA) has compiled a list of items that are considered to be a necessary part of each household’s Basic Disaster Supplies kit. The availability of these items can make it possible to shelter in place for several days in the event of emergencies that make it impossible to leave the home. Prolonged power outages, loss of water supply or road closures due to flooding or snow are just a few examples of what might make sheltering in place necessary.

Some of this may be taken with you as a “go bag” if you are required to evacuate for any reason. There are probably also specific items related to your disability that need to be included.

  • Medication in the original bottle
  • Backup batteries for assistive devices, tablets, and phones.
  • A week’s worth of disposable supplies.
  • Copies of key identifying information (photo identification, medical insurance cards)

Thanks to the Christopher and Dana Reeve Foundation and their post of Mike Collins’ comments on the subject.