Let’s be clear on #IL Philosophy and #ConsumerControl

This last couple of months I have been stunned by how many people have asked me to give them the actual citations that require more than 50% of the board, management and staff of a center be people with disabilities. In a few cases a board is questioning whether they really must hire an executive director who has a disability, or recruit board members from among people eligible for services — at least more than 50% MUST have a significant disability. I have had 4 such requests in the past two weeks. This part isn’t up for discussion, folks. This is the foundation of who we are in independent living. And “more than 50%” of one manager is one. More than 50% of two managers is two. Until a center is large enough to fill three management positions, the executive director must be a person with a disability.

The Rehabilitation Act itself addresses this area, and you will also find layers of information throughout the regulations that apply as well.

The Rehab Act itself, in Section 725 (c) Assurances (2) states that “the center will be designed and operated within local communities by individuals with disabilities, including an assurance that the center will have a Board that is the principal governing body of the center and a majority of which shall be composed of individuals with significant disabilities” and in (6) of the same section, states “the applicant will ensure that the majority of the staff, and individuals in decisionmaking positions, of the applicant are individuals with disabilities”. You can download a copy of the Rehab Act from this site: https://www2.ed.gov/policy/speced/reg/narrative.html If that is not enough, here are some references, all from 45 CFR 1329, the regulations related to Title VII of the Rehabilitation Act.

The first piece of information is found in the purpose at 1329.2 where it states: The purpose of title VII of the Act is to promote a philosophy of independent living (IL), including a philosophy of consumer control...

This lets you know that consumer control is the very foundation of IL.  The next references is in 1329.4, the definitions of consumer control: Consumer control means, with respect to a Center or eligible agency, that the Center or eligible agency vests power and authority in individuals with disabilities, including individuals who are or have been recipients of IL services, in terms of the management, staffing, decision making, operation, and provision of services. Consumer control, with respect to an individual, means that the individual with a disability asserts control over his or her personal life choices, and in addition, has control over his or her independent living plan (ILP), making informed choices about content, goals and implementation.

We do not currently have any further language, because the indicators have not been updated, but in their past reviews the staff of the Independent Living Administration, ACL, HHS has deemed that “management” and “operation” refer to the Board of Directors , that “decision making” refers to the executive director and a management team and that “staffing” and “provision of services” refer to the rest of the staff. Therefore they have consistently required that the board of directors be made up of more than 50% persons with significant disabilities. This term “significant disabilities” mirrors the language regarding who is served by a CIL.

The very definition of a Center, also from 1329.2, is:

Center for independent living (“Center”) means a consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agency for individuals with significant disabilities (regardless of age or income) that—

(1) Is designed and operated within a local community by individuals with disabilities;

(2) Provides an array of IL services as defined in section 7(18) of the Act, including, at a minimum, independent living core services as defined in this section; and

(3) Complies with the standards set out in Section 725(b) and provides and complies with the assurances in section 725(c) of the Act and §1329.5.

In addition, they define Eligible Agency (for CIL funds) as: Eligible agency means a consumer-controlled, community-based, cross-disability, nonresidential, private, nonprofit agency.

As soon as we receive the updated indicators for CILs, which are still in process, we can confirm any additional consumer control specifics, but as you can see, consumer control is expected throughout your operations including who has oversight of the programs of the CIL.

Regarding SILCs, Section 705 of the Rehabilitation Act states:

(4) Qualifications.

(A) In general. – The Council shall be composed of members–

(i)  who provide statewide representation;

(ii) who represent a broad range of individuals with disabilities from diverse backgrounds;

(iii) who are knowledgeable about centers for independent living and independent living services; and

(iv) a majority of whom are persons who are-

(I)  individuals with disabilities described in section 7(20)(B); and

(II) not employed by any State agency or center for independent living.

I hear that “reverse discrimination” argument now and then. It is not discrimination to have consumer control on your board in that you can still have non-disabled members on the board. They must not be in the majority, however, for the organization to remain in consumer control.

The law and the regulations are very clear on this. I am distressed to think that people in our movement continue to believe that consumer control is not important. This is truly the foundation of all that we are and do in Independent Living.

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Advocacy Skill Building Toolkit – Teaching Advocacy to Youth

You may have heard that, when Ed Roberts (the father of Independent Living) was asked to name the core services for Centers, he replied, “Advocacy, Advocacy, Advocacy”. While we know there are other core services, advocacy is the foundation. At both the individual and systems levels, advocacy is essential to our survival. People with disabilities continue to be devalued by our society. The most important skill we can learn is advocacy.

If you want to see a unique approach to teaching advocacy, you have to look at this material. How clever, engaging and effective to use games and improv to advocate. Check out this concept at https://www.youtube.com/watch?v=Gb1mYCCSbzE&feature=youtu.be

The Research and Training Center on Disability in Rural Communities (RTC) at the University of Montana in Missoula is a partner with Independent Living Centers in providing curriculum. Many of you have used their Living Well with a Disability, Working Well with a Disability, and Self-Employment publications and materials. They have released their newest — a toolkit to teach advocacy skills. While it is targeted to emerging leaders and youth, all advocates will benefit from the solid information and the unique approach. As they say on their website, “An important part of advocacy, no matter if the goal is to help one person or many, is establishing a confident voice, developed and supported by a community of peer support. This workshop and accompanying toolkit materials give participants the opportunity to explore their voices, build confidence, and display their skills both verbally as well as in written form. The intent is to provide a safe space among peers and trusted facilitators to introduce the concept of both group and self-advocacy.”

The toolkit is available at http://rtc.ruralinstitute.umt.edu/resources/advocacy-skill-building-toolkit/

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Changes in leadership — Succession Planning

Whether a transition is known and immediate, or totally unknown,  a transition is coming. It isn’t a matter of if — it is a matter of when.  The Executive Director and Board of your center need to take up this matter and decide — what will you do when it is time to pass the baton?

Here are some suggestions:

1. Develop a policy and procedure for how the board will seek a new Executive Director, should that become necessary. Get board approval before they actually have to search. Address key questions, like what to do if a board member wants to apply, (We suggest that a board member would need to resign from the board to apply for any position.) where you will advertise, (We suggest a national search including posting to IL websites like NCIL, APRIL, and ILRU.) and how applications will be reviewed, screened or otherwise addressed.

2. Address interim leadership. Often there is a period of time between when you know the position is becoming vacant and when the position is filled. Will the board appoint an interim from among current staff? Is that person to be considered for the position? Will you keep the prior exec on (if possible) for a period of time to train his/her replacement?

3. The current leader should make a list of the important tasks, those that are so specific they probably aren’t included in the job description. For example, as current executive director you are probably the person who goes into Grant Solutions and draws grant money down to be direct deposited in your account and keep your center running.

4. Have redundant systems for important access.  The new person won’t have much time after starting to figure out how to draw funds, sign checks or have other access. You want to determine who else can do this whether you are incapacitated for a week or forever. This may be a board member, or another staff member, but never have only one person who can access. Tip: Don’t just share your user name and password. Set them up with their own access so it is clear who is actually access things.

5. Through any significant change, keep your Project Officer, your SILC and your DSE informed. They will need to know if there is a change in leadership.

For more answers to this question — one that impacts all kinds of not-for-profits — I often look to more generic resources. You might look at Blue Avocado, for example, which operates a “board cafe” to address many issues.

Although I haven’t used it, I noticed this template and article that might be useful. And check out this week’s New Century CIL Blog for even more links.

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Satellites, branches and the number of centers…

WA tall tree with seven branches, each with a man in a colorful suit, each a different color.. e had a recent inquiry about the difference between at “satellite” and a “branch” center. Back in 2002 the Rehabilitation Services Administration produced a policy direction around the term “Satellite” for Centers for Independent Living.

The principle point of the directive from the former department overseeing IL grants, RSA, was that each center funded is a separate center. The centers with one board can refer to the second center as a branch of the first one but it is still a separate center from the funder’s perspective. They do not recognize “satellites”. Individual states may treat this differently with their SPIL and Part B funds, but at the federal level each Part C grant is its own center. The old directive states, in part, that:

There are two circumstances under which an existing CIL can expand by opening another office. First, a CIL can open an additional office located in and serving the center’s geographical service area, which is defined in the CIL’s application for funding. However, if an existing center opens an additional office in the geographical service area, the level of funding that the CIL receives cannot be increased in order to support the additional office because the service area is the same. Second, an existing CIL also can open an office that provides services outside the defined geographical service area specified in its grants. However, it may receive additional funds to do so only if the center successfully competes for the new funds through the procedures for establishing a new center under part C of title VII.1 According to section 366.2(b)(2), an applicant is eligible to apply as a new CIL if it proposes the expansion of an existing center through the establishment of a separate and complete center (except that the governing board of the existing center may serve as the governing board of the new center) at a different geographical location. . .

Section 366.22(a)(1) clearly states that this type of “satellite office” of an existing center is a new center rather than an existing center. Any funds received by an existing center to establish a new center at a different geographical location . . . are not included in determining the level of funding to the existing center . . .

Thus, an existing center may establish a “satellite office” that serves a different geographical area. However, the “satellite office” can use part C funds only if it applies for and receives the funds as a separate center. This is true even if the same recipient operates both centers.

If your center is able to have sufficient fund development to add offices or satellites, you need to make sure that you are following the rules for program income. If you raise the money with Part C resources — staff, office space, equipment, etc. — then the money raised has to follow the same requirements as the federal grant that paid for it. In other words, your Part C grant area and and other specifications will apply to the funds developed with those resources.

And if ACL informs us of a change in this interpretation, we will let you know!

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Do your bylaws include these fifteen important elements?

From time to time I get requests for sample bylaws or bylaws content for CILs. I don’t have any samples, mainly because there are no hard and fast national rules and the state requirements vary somewhat state to state. I do have a little advice and if you want more, would be happy to review your current bylaws and make suggestions.

There are organizations that provide sample bylaws. Here is a link you might find useful.

Since bylaws are the foundation for your organization, you may want to open with the mission or purpose of the organization. Typically the name is also included, and if the name you use is different from the one on your articles of incorporation you may want the corporate name, then “doing business as…” for the other name. Both should be in the bylaws in that case.

Look at these items and check them off. We can find some sample language if you aren’t currently addressing that area at all.

  • Bylaws need to provide your organization with structure. They should indicate how many members are on your board (or a minimum and maximum number like not less than 5 and not more than 15). You probably want to repeat the requirement from the law, that more than 50% of the members of the board must self-identify as individuals with significant disabilities. You can describe how individuals are nominated and elected. Is there an application process? Describe it.
  • How long is a board term? Can a member serve more than one term? What is the limit? Typically I see members serve 2 three-year terms, or 3 2-year terms, and then must sit out a year before being considered for new terms. Do you have attendance requirements? Donor requirements?
  • You will want to add  language about accommodations, something like “Materials for the board members will be provided in alternate formats if requested. Meetings will be held in accessible locations. If the board member requires other accommodations in order to fully participate, they should request those accommodations from the chair.”
  • State that all members are volunteers and cannot receive compensation for serving on the board, but may be reimbursed for actual, reasonable expenses incurred on Organizational business. You decide if this includes attending board meetings, in which case you may pay for mileage or an attendant or taxi fare etc.
  • Identify the officers of the board and their responsibilities, and the members of the Executive Committee. (Some CILs include only officers; others include one or two positions “at large” which are elected and give the executive committee broader perspective.)
  • State if the executive committee can make decisions for the full board between meetings, or if they must take all decisions back to the full board.
  • Other standing committees can be listed in your bylaws. I personally prefer to have just the Executive Committee and the Nominating Committee in the bylaws. The organization can have more committees, but wouldn’t be required to. If your board is small, lots of committees are difficult to maintain.
  • Minimum number of meetings, or a frequency. Don’t put “monthly” in your bylaws if you always take December off, for example. “Meetings will typically be held monthly, and the board will meet a minimum of ten times a year” might be good language. If your board only meets quarterly, you would adjust this language and make a provision for someone to review monthly financial statements with the Executive Director.
  • Define a quorum, which is typically at least 51%, or more than 50%.
  • Think about other details related to holding the meetings. Do you allow members to attend by phone or by video chat? Can you take an email vote between meetings? Are your meetings open to the public? Usually they are, except when the board meets in executive session to review personnel or legal matters.
  • I like to see the requirement that, if a board member wishes to apply for a position at the center, they must first resign their position on the board. A member cannot serve on the board when their employment application is being considered for any position.
  • Usually you see sections on risk management.
  • Define the fiscal year (Beginning October 1 and continuing through September 30 is typical, but there are others.)
  • The process for amending the bylaws is described. Often it requires a higher percentage to be at the meeting than 50%. Also typically the bylaws address what to do if the corporation is to be dissolved.\
  • Conflict of Interest is usually addressed. Here is a sample:


SECTION 1.   DEFINITION:  No member of the **** Board of Directors or Staff shall derive any personal profit or gain, directly or indirectly, by reason of his or her participation in ****. Each individual shall disclose to the President or the Executive Director any personal interest which he or she may have in any matter pending before the organization and shall refrain from participation in any decision on such matter. Any member of ****’s Board of Directors or Staff shall refrain from obtaining any list of **** clients for personal or private solicitation purposes at any time during the term of their affiliation.

SECTION 2.   DISCLOSURE:  Officers, Directors, and employees shall review the conflict of interest policy for applicability and, at least annually or as business is considered, disclose potential conflicts of interest in accordance with procedures established by the Board of Directors.

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When is a Youth receiving Transition Services?

Question: We have a question concerning documentation of youth transition services. When a Center provides services to a youth during the summer, when still enrolled in school but during summer break, how should this be documented? Would this service be documented in our database as a youth transition service? The other choice is to document this service as a different core service such as advocacy or independent living skills depending on the nature of service.

Reply: Services provided over the summer to youth who are still in school is recorded as a service to youth, but the service is the other core services (whictever apply), not transition. Youth transition services are only post secondary. The person has to have finished school, even if they moved to a GED program.

Typically you want to start services earlier than this, so that you are in touch with youth as they leave school and can begin to transition to post-secondary life. Post secondary can be after graduation, when a student drops out, when a they move to a GED program or when a student ages out by finishing their IEP at age 19, 20,21 or 22.

A few basics about planning

There isn’t a single way to write a strategic plan. We suggest that the CIL set goals and objectives that are measurable, and result in measurable outcomes. If you search for “outcomes” on our website at http://www.ilru.org you will find a number of on-demand training sessions addressing outcomes.

Any planning tool or template can be used to record this. Most CILs put it in narrative form in a word document. Some set it up in a chart. Some borrow or buy a template (you can Google “strategic plan template”).

Typically the elements of a plan are the mission and/or vision, long range goals, short range goals and specific measurable objectives with persons responsible and a target date, so everyone can check in from time to time and see how they are progressing on the plan. Typically the board (with the ED and with or without other staff and stakeholders) set the mission, vision and long range goals, then the staff flesh them out and are held accountable for their progress and outcomes.

I suggest that CILs start with the grant goals they have promised to their funders and make sure that any plan encompasses those routine things along side of their dreams.

What does your dashboard tell you?

I have a new car — new to me, anyway. It is a hybrid, so boy oh boy, did I have a lot to learn about my dashboard. And just when I thought I had it figured out my son-in-law borrowed the car, and when I got it back the dashboard measures had changed completely. I realized then that there were many different choices and I could customize the dash to tell me what I most wanted to know. And of course key safety indicators, like the check engine light and the seat belt light appear when needed to provide timely information about safety.

TechTarget says this about Dashboards: “In information technology, a dashboard is a user interface that, somewhat resembling an automobile’s dashboard, organizes and presents information in a way that is easy to read. …… some product developers consciously employ this metaphor (and sometimes the term) so that the user instantly recognizes the similarity.”

Businesses, including Centers, have a lot of information available to them. We live in an age when the sheer volume of information is sometimes so daunting that we don’t take the time needed to sort out what is most important for our board of directors and managers to measure the indicators that most describe how the Center is doing.

But it is worth the time to identify what you want to measure and to set regular reviews of that information. A thoughtful approach to identifying and providing those indicators to the board can result in a board that is much more informed about the operations of the center without feeling a need to intervene in the day to day management of the center.

Let’s talk about the financial statements as an example. What does a non-profit typically provide to the board? A mix of financial statements such as a balance sheet, a budget vs. actual report, maybe a variance report, aging reports, etc. Depending on the size of the organization, these can constitute pages and pages of information. It may be more effective to have a finance committee review all this detail and for the full board to have, instead, some quick measures related to these things such as:

Finance: Target 6 Months Ago Now Comments:
1. Days of unrestricted cash on hand. 45 days 32 days 62 days Our fundraiser provided 17 additional days of unrestricted cash this month.
2. YTD budget/actual comparison for income and expense. Within 10% -14% income; -16% expense -4% in -9% exp We continue to be under budget on expenses and  income, and within the 10% variance.
3. Days from month end to financial statements 15 days 21 days 17 days We continue to tighten our record keeping to provide timely financial statements.
4. Receivables over 30 days $6,527.00 $9,000.oo $4,200.00 We have improved our billing and this is resulting in on-time payment from fees for service contracts, reducing aging receivables.

Your measurements will vary, but you get the idea. A quick glance at these figures can provide important information very quickly. You may want to consider measuring program performance like numbers served, types of goals and collaborations in the community. Human resources concerns like workers comp and performance appraisals can be reflected. The board may want to consider its own performance, including attendance, ED performance appraisal, recruitment and their % and $ of donations generated by board.

If your center is using dashboard measurements, would you please share them? We are looking for some best practices, and are also struggling with how to represent these graphically and still be accessible to screen readers.

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Business Agility – how to approach your operations in a flexible, responsive manner.

Business agility is closely related to something called “agile project management”, an approach to constantly reassess and adjust priorities and being flexible as the circumstances change, so that you maximize your desired outcomes.Think about it — we live in a world where everything is connected, and connection is instantaneous. Information moves so fast, we must be agile in responding.

If you are working with a strategic plan, you know that your goals, objectives and activities typically change over the course of the multi-year plan.  Have you noticed that in recent years they are changing even more quickly? Sometimes there are external factors that force change – funding, geography, economy, technology, regulations, leadership and more. If you want to remain competitive and take advantage of new opportunities, then the ability to anticipate change and adapt quickly is critical. Is your Center or Council ready to shift and change quickly if you need to?

If your leadership tends to get bogged down in long discussions and to deliberate across many meetings before making a decision, then being agile will take some willingness to consider other models of decision making.

Service delivery. Review how you deliver your services. While it is true that all centers are required to offer the same core services, there is a great deal of latitude for the local center to develop its service delivery model to match the needs of its community. Independent Living Skills are taught many different ways across the country — at home, at the center, or in a public place like a home economics classroom in a high school or college. Some are group classes at the center, some are on-line courses and others are one-to-one. Some emphasize skills for mobility, others for financial security, and other for shopping, cooking, cleaning and other skills needed to address those skills the individual finds most pressing at the moment.  Almost always, as the consumer accesses the community, advocacy issues emerge related to equal access. The best Centers adjust both the topics and the teaching method to meet the individual needs of the consumer in that moment — which requires some agility.

Consumer Satisfaction. To know whether your services have the agility that your consumers need, you need to find out if they are satisfied. All centers are required to measure satisfaction, but are you asking the right questions? For example, how quickly did the center respond to the consumer’s first inquiry? We live in a 24/7 world. Did your response meet the expectations of the consumer?

Responsiveness. Examine your internal processes for getting a new person started with their own plan for Independent Living. How many steps does it take? How much time? You need to find the right balance between an “intake” process that allows you to understand what the person wants and needs, and a bureaucratic process  that has too many steps. Think about how you can meet our funder’s requirements and still keep things moving. (Our regulations require that you determine eligibility – that the person says they have a significant disability, and that you inform them of some specific things like rights, registering to vote, and the Client Assistance Program, for example.) Using a prepared packet and a checklist might assist you with meeting the requirements quickly so you can move on to understanding their Independent Living goals.

Empowering, not controlling. The individual sets their own goals and does most of the work to achieve them. The staff role is to provide peer support, to assist the person in knowing their choices, and to provide them with community resources and connections that might further their Independent Living. If the CIL has a rigid, controlling process for “intake”, you will be less agile in the delivery of needed supports and core services. You want a process that can move with the person through their journey, not attempt to take them where you think they ought to go.

From Service Providers to Community. I have noticed a disturbing trend among some centers, a trend to identify more as service providers rather than as Independent Living. The IL philosophy is a movement by and for people with disabilities. Services are provided from within that framework of consumer control, peer support, equal access, and self-determination. If service models come first, we have lost our way. If we are to be agile in the 21st century we need to reclaim our place as a community of people with disabilities.

Here are some key phrases from the Responsive Organization’s manifesto for you to think about:

  • … people who want a better world for themselves and their communities are looking to new ambitious organizations to shape our collective future.
  • Responsive Organizations are built to learn and respond rapidly through the open flow of information; encouraging experimentation and learning on rapid cycles; and organizing as a network of employees, customers, and partners motivated by shared purpose.
  • A clear and visionary purpose brings together stunning talent, committed shareholders, partners, and communities.
  • Because we can’t predict the future, time and resources devoted to planning are a less valuable investment than embracing agile methods that encourage experimentation and fuel rapid learning.

Building this new kind of organization should come naturally to Centers and SILCs because of our commitment to consumer control. Take a deep look at your organization — have you drifted from that principle? Evaluate your Center or SILC and the ways in which you can remove bureaucracy and be agile in responding to consumers.

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How to have an effective relationship between the Board Chair and the Executive Director

There are specific dynamics to every relationship. There are people in your life who make you bristle just by coming into the room. Others make you smile when you think of them. Some share your sense of humor and you often laugh together. You connect to others through a shared experience that was meaningful to both of you. Whether at work, at home, or out in the world around you, relationships are both the best and worst part of our lives.

One of the relationships I am often asked about is that between the board chair and the executive director of a Center or Council. Inevitably when that comes up, the issue has something to do with one or the other either overstepping or failing to fulfill their duties. For that reason we often recommend that the two sit down to sort out their respective roles and responsibilities. Clarifying and agreeing on what each will do should provide the framework for the relationship between the two. However, that is not the only dynamic at work in this important relationship, and in fact sometimes being too rigid in emphasizing this can impair the agility of the organization.

Of course, there can be tension in this relationship because each of the parties is holding the other accountable. The Executive Director works with the Board Chair in the development of the agenda, and in arranging the meeting place, assuring reasonable accommodations for board members, and in identifying potential new board members, for example. Seldom does the volunteer chair take the lead on this and frankly, the Executive Director has business items that must be approved by the board, so has a stake in that agenda.

In some recent reading I came across an article* that identified some other dynamics that impact the Board Chair/Executive Director relationship.

  • Facts-sharing. The study found that keeping each other informed, with or without actually having a conversation, was the most basic of the interpersonal interactions.
  • Ideas-sharing. brainstorming, problem solving or thinking things through together strengthens the bond. Quick exchange or longer discussion, this two way sharing strengthens the dynamic between the parties.
  • Knowledge-sharing. When either of the two provides learning or coaching for the other it strengthens this work relationship.
  • Feelings-sharing. Support, reassurance, caring and appreciation are types of feeling sharing that strengthens this bond.
  • Give-and-take. When each is willing to adjust to the other person’s style, whether the ED is adjusting to a new Chair or the Chair to a new role, then these accommodations for each other help them to be aligned in their board work.

And the more of these dynamics the better. The study found that pairs with the strongest trust demonstrated all of these interaction types. In those that demonstrated great relationships, they described energy and synergies in the relationship that catalyzed organization productivity and engagement with the community. Often they were able to leverage the relationships between all the board members and work together to make connections with key people in their community to further their mission.

*Hiland, M. L. (2006). “Board Chair-Executive Director relationships: Are there interpersonal dynamics that contribute to creating social capital in nonprofit organizations?” Fielding Graduate University, Santa Barbara, CA.

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