IL-NET TA

Personal reflection on chronic pain

Usually this blog focuses on regulations that impact Centers and Councils. I am going to have a completely different conversation today. If you aren’t comfortable with where this goes, that is okay. I will resume the more typical posts next week.

In the meantime I want to talk about invisible disability, my own disability, and some of the activists, writers or speakers that have informed my journey. They are much more eloquent than I, and at the end of this post I have given some links in case you want to examine some of these thoughts further. I ant to suggest that, sometimes when we can’t see a disability, and when an individual is unwilling to talk about it, our community has sometimes questioned the validity of disability in others. So I think this is a story worth telling.

Back in the late 1970s and early 1980s, I didn’t acknowledge that I had a disability, not even to myself. In this movement I was surrounded by people whose disability was evident either by their appearance or their use of equipment. I was struggling to get a handle on a set of symptoms that later garnered me a diagnosis . Not that a diagnosis gave me much relief. Most doctors didn’t (and many still don’t) believe that Fibromyalgia is real anyway. Luckily I found one who did. But my symptoms were often debilitating and I was always looking for relief in new medications, pain patches (which at the time weren’t available in the US and my doctor acquired for me from China), muscle rubs, stretches, massage of different types, chiropractor adjustments, acupressure, shots for pain — on and on. If I mentioned pain to anyone — as they still do today — they attempted to offer a remedy from, “Just take more Tylenol” to obscure practices with weird names. And if I could spare the money, I usually tried the remedy. I even offered my own suggestions to people who seemed to have similar conditions. However, it isn’t always that simple to implement the ideas of others. I know I would feel better if I lost weight — but when I can barely move, that is difficult to achieve. I have a nephew who is a faith healer — and is waiting for me to ask for his prayers, I know. People have suggested marijuana in different forms, the peleo diet, a different mattress, pillows in all shapes and sizes, special shoes and more. I have tried most of them without any long lasting success. I repeatedly use some of them because I seem to get a little short term relief. It is interesting how so many people think they know what is best for us, or in their desire to offer support, instead offer treatment advice. One of the reasons I don’t talk about this much is that I am weary of advice from people who don’t really get it.

I know that my brothers and sisters with visible disabilities have always dealt with the unwanted advice of others. I remember having lunch back in 1980 with Bob Mikesic, now the co-director at the center in Lawrence, KS who was working with me at the time. An older lady we didn’t know came over to our table and patted his hand and said, “When did you get out, dear?” I couldn’t even fathom what she meant, until Bob told me that happened a lot — people assumed he had to be hospitalized since he used a chair.

The truth is, most of the time, if I want to, I can “pass” as not having a disability. I build up my energy, take the pain medication that hurts my stomach, and push on. I truly love being with our people at meetings and conferences, so can usually power through fairly effectively when I am presenting. I smile and ignore the pain. I try not to make an issue out of the things I need to function, including rest and medication and topical pain treatments. I’ve just returned from a wonderful gathering, the SILC Congress, where I presented. I blamed my misspeaks as adjusting to the time difference, but the truth is that I have moments of fog that come and go and that are sometimes called “fibrofog”. And the truth of the matter is that I had to bank sleep before I left, went to bed early every night, slept on the plane both ways and now more than a week later I still have a bone deep fatigue and pain to cope with. It has been worse — when there is a lot of drama and trauma to the meeting, it hits me harder. But there is always a degree of pain and coping.

I am not telling you this to get your sympathy. In fact, sympathy sometimes makes me prickly. I am telling you this because it is important for us as a community to acknowledge what we need and to support each other by allowing each person to define their disability and their support needs. I don’t have to have assistance with personal care needs (although I use grab bars when available, can’t open a door with a round knob and sometimes I don’t think I will be able to step over the tub edge after a shower. And sometimes the pain has been specific enough that I’ve needed a brace, a wheelchair for distances, a cane to walk.) The range of disabilities that is the true “cross disability” nature of Independent Living means that each of us has a different set of needs. We need to find our solutions such as they are, our coping mechanisms. We need to be able to back away if the situation is more than we can handle at the moment. And we need to allow our brothers and sisters the courtesy and respect of letting them tell us how we can assist and provide a safe space for these conversations without judgment. How can we embrace our disability, hold disability pride if we don’t even acknowledge it?

A few years ago, when working with CIL Berkeley, a woman in the group named Stacey Milbern approached me to talk about Disability Justice. It was a fairly new term to me, and she gently guided me to a fuller understanding of how disability justice is more than disability rights. I have great respect for her, especially because she herself is visibly and vocally a part of communities that are often treated unjustly. Through her I have begun to understand that disenfranchisement can have a cumulative effect, that layer upon layer, the bullying, mistreatment, racism, sexism, and more have contributed to our disability experience. I have continued to listen to her through her Facebook posts, because she is someone who understands injustice from a personal level and describes her solutions. She and others presented at one of IL-Net’s on-site training, Liberation to Leadership, which you can find here. The presenters talked frankly — and painfully — about the added weight of being part of multiple groups who are disenfranchised. If you are looking for a dynamic presenter around disability justice, system change, and diversity, she is excellent in those topics and more.

But back to my journey. In my younger days my appearance didn’t reveal that I could relate to disenfranchised groups. I am beginning to relate as an over-65 woman, but I still have privilege in some areas. I am still white, straight, and don’t have a visible disability. When I listened to the story below, though, I felt a kinship that I don’t always feel in the company of others with disabilities. Her words resonated as she described the health care system and the needs for support. The title, My Body is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It and Want it to Matter Politically — gives you a hint of what you are in for. It is long — carve out 90 minutes — but It was worth it, eyeopening and I found it was very freeing to hear the speaker and her audience describe things that I seldom put into words in my own disability experience.

Here is a list of harmful comments you might find useful to know or share.

Although I have not yet met her personally I have also been impressed by the writings and interviews done by Alice Wong. Check them out here: https://disabilityvisibilityproject.com/author/alwong199/

Understanding Your CIL’s Audited Financial Statements

by John F Heveron, Jr. Principal, Heveron and Company CPAs, Rochester NY

Here is a quick overview of audited financial statements and what to look for when reading them.

Auditors Cover Letter/Opinion

This is addressed to the board and is dated when the audit was completed and accepted by management.

This report has headings, and one of the headings is “opinion”. If what follows is anything other than the standard language “in our opinion the financial statements described above present fairly …..”, That is cause for concern, and you should investigate what led to that modified opinion.

Income Statement or Statement of Activities

This will include all income earned by the organization and all contributions that are not subject to uncertainties (conditions).

Income earned isn’t the same as income collected. Some amounts get paid in advance, sometimes amounts are earned but not yet paid.

There may be contributions of in-kind items that don’t include any cash. The financial statement should include a Statement of Cash Flows that attempts to explain the differences between what was earned and what was collected, but it is a difficult, often confusing statement to read.

The income statement or statement of activities often includes the prior year as well as the current year, or at least totals for the prior year, so you can tell whether revenue went up or down.

The different categories of income tell you how diverse the funding is and whether funding from specific sources is up or down. Diverse funding is considered a sign of financial stability.

The board may request five or even 10 years of income by source and expense by type in order to see longer-term trends. This is also helpful for budgeting.

When you look at expenses consider where the organization is spending their money. Is the great majority of it spent directly on program services? How do salaries compare to similar organizations?

Balance Sheet or Statement of Financial Position

This statement lists assets (what the organization owns) and liabilities (what the organization owes) on a specific date, most commonly your fiscal year-end. The difference between assets and liabilities is your equity or net assets. Net assets are generally broken down into unrestricted net assets, temporarily restricted net assets, and permanently restricted net assets. Nonprofit financial statements are all being changed in the near future to have just two categories of net assets, which are “net assets without donor restrictions” and “net assets with donor restrictions”, although organizations will be able to include subcategories within each of those categories.

Our CILs don’t typically have a lot of assets, so this statement may be more meaningful for those with property and equipment than others.

This statement will also show debt such as lines of credit, installment loans, building loans, accounts payable, and payroll and payroll taxes that have not been paid yet. Be alert if accounts payable, unpaid payroll or taxes get larger from year to year. That might signal a cash flow problem.

This is a good statement for the board to review but should not be the only report they review. The income statement or statement of activities is also very important.

If you want to understand your CIL’s financial statements, boardsource.org publishes many helpful resources for board members, including a book called Understanding Nonprofit Financial Statements. This is available on Amazon.

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What does it mean to have an active board?

The board is the right size to operate effectively.

Your bylaws require a minimum number of board members, and sometimes also give a maximum. Have you thought about what number works the best?
I have seen minimums as low as three — and while this number might help you stay legal if you lose members, it is not a number that seems very efficient for getting the work done. More typically I see five or seven as a minimum number, and personally I like seven because you can share the work a little more effectively if your minimum includes more people to do the work.
Sometimes there is a maximum in your bylaws. Boards of twenty and up have lots of people to do the work, but discussion is more difficult to encourage/manage with that many people around the table.
If you have an active committee structure — which is where much of the work of an active board takes place — you need enough strong members to chair the committees, and enough other board members to serve on at least one and possibly more committees.
I have heard an argument that you must always have an odd number of board members to prevent a tie vote. I don’t feel this is pertinent, because often not everyone attends, and you have a chair to break a tie if it occurs.

The board understands its role and does its work, including

Sets the vision, mission and direction for the organization, with input from the executive director, staff and consumers.
Is diligent in requiring to see financial statements monthly, and the results of any audit as it is completed.
Hires, supervises and evaluates the executive director.
Does not get involved in day to day operations, but goes through the executive director if day to day topics are discussed.
Is committed to developing resources that allow the organization to grow and thrive.

The board is truly consumer controlled.

51% of your members are people with significant disabilities — that is a requirement. A strong CIL board is 51% people with significant disabilities who are active in the disability community. If you recruit someone with a disability who is new to IL, you must make sure they understand the history and philosophy of Independent Living so they can become active in the disability community.
The board seeks consumer input into key areas of planning, setting the mission and evaluating the services.

Each board member commits to the organization in concrete ways.

Is a donor to the organization. The amount may not be important — not everyone has the same resources — but every board member needs to believe in the CIL enough to donate.
Is an ambassador to the community regarding your CIL. Active board members believe in what we are doing and are glad to spread the word to the community.
Attends the meetings of the board. Many organizations, in fact, remove board members who miss a certain number of meetings.
Believes in Independent Living. Their language and attitude should show their commitment to equal rights for people with disabilities, and for people with disabilities being in control of their own lives and choices.
Serves on one or more committees.
Seeks out other potential board members and encourages them to apply.

I have the opportunity now and then to assist centers who do not have an active board. Sometimes they have provided a list of board members to the reviewer — the DSE or ACL — as part of a review, and there has been a disturbing trend among centers in trouble. The reviewer reports that when they called, the number to speak with a board member, it was disconnected or, worse, the person answering denied being on the board or didn’t even know what the center was.

Do not continue to carry names on a list to meet your minimum number of board members in a review. If you’ve lost members, own up to it and put strategies in place to recruit new ones who will be active. This is hard work, and should not be left only to the board. The executive director is likely to meet potential board members while doing business, and certainly can encourage those individuals to apply to be on the board as well.

You want to recruit continually. You can’t look at your roster in July and say, “Oh, no, we have three people terming out! We need to elect three new people in September.” You are unlikely to find good members when you need them unless you have been seeking them out continuously.

And then work with your members to encourage them to be active, through training, mentoring, providing them with resources and supporting them to do the work of an active board member on an active board of directors.

Allowable costs: Fines, penalties, damages, legal defense?

45 CFR §75.435 and 75.441 address the costs of these legal issues. The first is very detailed, so I am only going to touch on highlights. If you are working through this, your attorney will want to review the entire section. Much of this is quoted, but it is not complete. Your main requirement is that, if you are working on any issue of non-compliance with law or regulation, you want your attorney and accountant to help you assure that you are tracking the costs separately and not charging anything to your federal grant that is not allowed.

Costs incurred in connection with any criminal, civil or administrative proceeding (including filing of a false certification) commenced by the Federal Government, a state, local government, or foreign government, or joined by the Federal Government (including a proceeding under the False Claims Act), against the non-Federal entity, (or commenced by third parties or a current or former employee of the non-Federal entity who submits a whistleblower complaint of reprisal in accordance with 10 U.S.C. 2409 or 41 U.S.C. 4712), are not allowable.

Costs include the services of in-house or private counsel, accountants, consultants, or others engaged to assist the non-Federal entity before (including investigation expense), during, and after commencement of a judicial or administrative proceeding, that bear a direct relationship to the proceeding.

If a proceeding referred to above is commenced by the Federal Government and is resolved by consent or compromise pursuant to an agreement by the non-Federal entity and the Federal Government, then the costs incurred may be allowed to the extent specifically provided in that agreement.

Costs related to wrongdoing of anyone within your organization cannot be paid for through federal funds.

An authorized Federal official must determine the percentage of costs allowed considering the complexity of litigation, generally accepted principles governing the award of legal fees in civil actions involving the United States, and such other factors as may be appropriate. Such percentage typically must not exceed 80 percent.

Costs which may be unallowable under this section, including directly associated costs, must be segregated and accounted for separately. During the pendency of any proceeding covered by paragraphs (b) and (f) of this section, the Federal Government must generally withhold payment of such costs. However, if in its best interests, the Federal Government may provide for conditional payment upon provision of adequate security, or other adequate assurance, and agreement to repay all unallowable costs, plus interest, if the costs are subsequently determined to be unallowable.

Costs resulting from non-Federal entity violations of, alleged violations of, or failure to comply with, Federal, state, tribal, local or foreign laws and regulations are unallowable, except when incurred as a result of compliance with specific provisions of the Federal award, or with prior written approval of the HHS awarding agency.

Bottom line — if you or someone in your organization failed to uphold the requirements (law and regulation), then you cannot expect your federal grant to pay for the costs of investigation, defense, or any resulting fines or penalties. If you are able to settle, the settlement may include these costs.

There are a number of other costs addressed in the regulations. Ask about any of them here or contact my at paulamcelwee.ilru@gmail.com

Are fund raising costs allowed? How is fund raising different from resource development?

In the Code of Federal Regulations, 45 CFR §75.442, fund raising as a cost line item is defined as the costs of organized fund raising, including financial campaigns, endowment drives, solicitation of gifts and bequests, and similar expenses incurred to raise capital or obtain contributions are unallowable. However, fund raising costs for the purposes of meeting the Federal program objectives are allowable with prior written approval from the Federal awarding agency. To get prior approval you need to contact your Project Officer.

There is, however, an interesting requirement in the rehabilitation act that centers conduct “resource development activities”. That reference is found in the Rehabilitation Act, Title VII, Section 725(b)(7) “RESOURCE DEVELOPMENT ACTIVITIES.—The center shall conduct resource development activities to obtain funding from sources other than this chapter.”

This makes it clear that resource development — which is not defined — is not just allowed. It is required. You need to keep your costs for this separate so that you can properly allocate your indirect costs against this activity.

Take the time in your organization to define resource development, and to approach your project officer for approval of any expenses that could be questioned.

Both allowable and unallowable fund raising activities must be allocated an appropriate share of indirect costs under the conditions described in §75.413.

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Are advertising and public relations allowed? Conferences?

My typical answer to whether a cost is allowed is “It depends”. Remember we are talking about whether you are allowed to use federal grant funds (usually Part B and Part C funds) to pay for these things.

45 CFR §75.421 addresses advertising and public relations. It defines the term advertising costs means the costs of advertising media and corollary administrative costs. Advertising media include magazines, newspapers, radio and television, direct mail, exhibits, electronic or computer transmittals, and the like.

Advertising costs are allowed for recruiting staff, for seeking out needed goods or services, for getting rid of property acquired through the grant that is no longer of use to the grant, and most important for centers, for outreach.

Sometimes you are asked to sponsor an event — to have an add in a program for example. Ask yourself, how does this help with outreach to consumers who are unserved or underserved? If you expect the individuals reading the program to be potential consumers, then you may be able to justify the expense. Any time you have this kind of expense, it is well worth it to write out your justification and include it with the expense information. Tell why you feel this is allowable advertising rather than non-allowable.

In the same section of the regulations, the term “public relations” is defined to include community relations and any activities dedicated to maintaining the image of the non-Federal entity or maintaining or promoting understanding and favorable relations with the community or public at large or any segment of the public.

The only allowable public relations costs are costs that your grant specifically requires, costs to communicate with the public and press about the accomplishments of the grant, and public relations to keep the public informed around “matters of public concern, such as notices of funding opportunities, financial matters, etc.”

Ok, all the above may be allowable, as long as you justify how it fits into the allowed areas. Unallowable advertising and public relations costs include a list of things that federal funds specifically cannot be used for, including:

Costs of promotional items and memorabilia, including models, gifts, and souvenirs;
Costs of advertising and public relations designed solely to promote the non-Federal entity.Costs of meetings, conventions, convocations, or other events related to other activities of the entity (see also §75.432), including:
Costs of conferences including the costs of displays, demonstrations, and exhibits; of meeting rooms, hospitality suites, and other special facilities used in conjunction with shows and other special events; and salaries and wages of employees engaged in setting up and displaying exhibits, making demonstrations, and providing briefings.

Before you panic about whether you can attend that national conference, note that training and education costs are allowed, and that travel costs related to that training and education may be allowed if you can justify that the attendance is necessary to the one attending. Travel costs are the expenses for transportation, lodging, subsistence, and related items incurred by employees who are in travel status on official business of the non-Federal entity. Specific to lodging and subsistence, the hotel expense is allowed if it is considered reasonable. If you tend to book a room that is more expensive than most, that cost may be questioned. In that case you have to explain why it was necessary in your financial documentation of the costs. You also must follow you own written policies around travel.

There is an expectation that you use commercial (not charter) air travel and that your cost is for not more than the least expensive unrestricted accommodations class they offer. It would not typically be allowed for you to fly first class, for example.

If you are involved in sponsoring a conference, look at 45 CFR 75.432 on conferences. A conference is defined as a meeting, retreat, seminar, symposium, workshop or event whose primary purpose is the dissemination of technical information beyond the non-Federal entity and is necessary and reasonable for successful performance under the Federal award. Allowable conference costs paid by the non-Federal entity as a sponsor or host of the conference may include rental of facilities, speakers’ fees, costs of meals and refreshments, local transportation, and other items incidental to such conferences unless further restricted by the terms and conditions of the Federal award. As needed, the costs of identifying, but not providing, locally available dependent-care resources are allowable. Conference hosts/sponsors must exercise discretion and judgment in ensuring that conference costs are appropriate, necessary and managed in a manner that minimizes costs to the Federal award.

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Allowable costs for federal grants – can we buy a building?

In that list of costs that are not allowable (found in 45 CFR 75) Interest is sometimes allowable and sometimes not. Generally, interest on loans to manage your cash flow are not deductible whether they are line of credit loans, credit card charges, short term loans, or internal charges for borrowing from your own funds including temporary or permanently restricted funds. .

I think we all agree that interest is a substantial part of the costs for buying a building. Here is what IS allowed: Financing costs (including interest) to acquire, construct, or replace capital assets are usually allowed. An asset cost includes (as applicable) acquisition costs, construction costs, and other costs capitalized. Typically this means that the purchase costs for a building are allowed, assuming it is where you provide services and not as an investment or for another purpose. You must use the capital assets — including a purchased building — to support your Federal grant award.

Some organizations put their building into a separate entity for legal protection or other reasons. However, that entity can’t charge you — and you can’t charge any more to federal awards — than you would if you owned the building.

You may want to look at a lease-purchase arrangement. You can do so if you can substantiate that the the reimbursement costs, including interest, are less costly than another alternative such as a standard lease or an outright purchase. (It seems likely that a lease purchase would include some additional costs that would always be in excess of a lease amount.)

One of the conditions is that you expense or capitalize allowable interest costs in accordance with Generally Accepted Accounting Procedures (GAAP).

If your plans include incurring a debt of over $1 million to purchase or construct your building, unless you can contribute 25% of the purchase cost outright (an “initial equity contribution”), there are some conditions. First, you cannot be reimbursed for all the interest if the building is being used for multiple projects. You have to make sure only the part actually used for a project is charged to that project. Secondly, you have to complete a somewhat complicated monthly report of cash inflows and outflows related to the building and allocate costs and cash flows properly. If you have money coming in (inflows), you will need to adjust the amount you request from the grant to take that into consideration.

Most centers that are buying a building calculate what they can be reimbursed for through depreciation. Details are found in 45 CFR 75.436.

Depreciation is the method for allocating the cost of fixed assets to periods benefiting from its use. You may be compensated for the use of your building, provided that it is needed in the activities of your grant, and properly allocated to Federal awards. Such compensation must be made by computing depreciation and allocating it properly. To the extent your building is also used for administration, you can also include some of the cost in indirect.

The computation of depreciation must be based on the acquisition cost of the assets involved. If you are lucky enough to receive a donated building or property, you can either use the value for match, or may depreciate based on the property’s fair market value at the time of the donation . That fair market value is treated as though it was your acquisition cost. You will want to have an accountant assist you with this — the regulations are thorough and you must meet all the requirements. There are costs that you can’t depreciate, like the cost of the land. You will need to establish the useful service or useful life of the building. Then you will compute it’s monthly value over its lifetime and that is your monthly depreciation that can be charged to your grant as a direct or indirect cost.

You can consider the entire building, including all its components, or you can break it into multiple components and depreciate each separately. The entire building, including the shell and all components, may be treated as a single asset and depreciated over a single useful life. A building may also be divided into multiple components. Each component item may then be depreciated over its estimated useful life. The building components must be grouped into three general components of a building: building shell (including construction and design costs), building services systems (e.g., elevators, HVAC, plumbing system and heating and air-conditioning system) and fixed equipment (which a CIL would not typically have, but includes things like sterilizers, casework, fume hoods, cold rooms and glassware/washers).

If you choose the depreciation method of identifying and being reimbursed for your costs, make sure you support your depreciation calculations with property records and document how you came up with the figure you are using. Again, this is complex so you should consult with someone before selecting this method.

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Allowable costs for federal grants — about lobbying

Over the next few weeks we are going to address the costs that are NOT allowed with federal money, or that are allowed in some cases and not others. The first topic we should discuss is lobbying.

First, a CIL or SILC is allowed to lobby for specific legislation — you just can’t do it with federal money. Any staff time spent lobbying is tracked, and the staff time and both direct and indirect expenses have to be paid for with non-federal, discretionary funds. This would include any legislative contact when you request a specific action on a specific piece of legislation.
Second, lobbying also includes grass roots lobbying — anything you do to get the individuals in the disability community to vote in a certain way. It is also considered lobbying if you go to anyone in the chain of authority over services, from federal legislators to the staff of the offices funding you, in an attempt to sway them concerning your funding.
I’m sure you can see where a CIL may at times want to take their advocacy further, and when they lobby, they need to keep accurate records of the costs and make sure they can show that the lobbying costs were not paid for with federal money. Most centers set aside donations and other discretionary money so that they can lobby when needed. Our role as advocates may take us into lobbying territory, and clear records of the costs will serve you well.
Finally, lobbying does not include other contact with legislators to inform them of the status and purpose of your organization, or even to provide testimony related to legislation, right up to the point that you might want to suggest how they vote. At that point you’ve crossed back into lobbying territory.
To keep your 501(c)(3) status with the IRS, you cannot spend a significant amount of money on lobbying, and you cannot give money to or have signs in your offices (or any other support from your organization) for any specific candidate or party. You can hold a voter education workshop as long as you don’t suggest how people vote. You can hold a candidate forum, for consumers/voters to ask questions as long as you invite ALL the candidates for that seat. They don’t all have to show up, but you have to invite them all.

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More about Asset-Based Community Development

While I am no expert in the science of Asset-Based Community Development,the ideas ring true to me. I like the concept of leading from our strengths, both individually and in community. All of us have gifts, areas where we are strong. Surely within the disability community, we all can bring those gifts to the work at hand. Our purpose includes equal access in our communities, for example. What gifts do community members bring to achieving change in access?

Of course, to recognize strengths or assets in ourselves or others we need to think about them and share our gifts with each other. One tool is to ask people about their gifts, in three difference categories. First, what are your gifts of the hand? What things can you make, do, fix or create with your hands? Secondly, what are the gifts of the head? What do you know about, or what are you interested in learning. Finally, what are the gifts of your heart? What are your passions, cares and concerns?

Apply these to the work at hand. If you are targeting a specific neighborhood for improving access, the people in that neighborhood very likely already know what some of the local assets are. They know what organizations are already present n that neighborhood. They know their strengths, what streets and buildings and services are physically accessible. Neighbors may know the individuals and associations of their community. They know what cultural concerns are present.

In the ABCD model you:

Focus on ASSETS
Build from OPPORTUNITIES
Emphasize ASSOCITATIONS
Focus on COMMUNITY with a goal of EMPOWERMENT
Remember power comes from RELATIONSHIPS
PEOPLE are the answer.

As you plan, ask these questions:

As neighbors, what can we achieve by using our own assets?
What can we achieve (leverage) with our own assets if we get some outside help?
What can’t we do with our assets that must be done by outsiders?

Most goals can be achieve with the community’s own assets.

“Helping people displaces their power.”

If you like to study social dynamics from interesting sources, you may want to check out Asset Based Community Development. The Center in my home town, Fresno, CA, invited me to a community wide conference on Asset Based Community Development (ABCD for short). This is a well established program taught around the country to all kinds of communities organizing to create change. It isn’t Independent Living, but I found some interesting parallels, and some great quotes, like the title above, used by Ron Dwyer-Voss during the presentation.

I was especially interested in something called the Citizen Power Progression. This is a ladder or hierarchy, with the labels “victim” and “client” at the bottom. In my mind these correlated with people who receive services, but aren’t involved in the life of the disability community. These are people we might be “helping” – and if they remain those who are “helped”, they may not exercise their voice, their power. Change may happen here, but on a more limited scale than the next levels.

The next rung is “Advisor”. This made me think of the different models for peer support around the country. People with disabilities sharing with each other, mentoring as people come into their own confidence and power. It is on the right track, but doesn’t really acknowledge full power.

“Advocate” is the next, essential level. We must speak out for the things needed in our community, against injustice. As we all know, advocacy can be powerful — but it is not always successful, and not always at the level true consumer control. If you think about the community you serve, and about the staff and board makeup, don’t look just at the numbers. Look at whether or not people from the disability community are in control or are only clients (consumers), advisors or advocates.

Because real power is in the hands of those who produce the vision, who make the change happen, are the ones with community power. Real change happens when our people are in positions of power — not just testifying to the Transportation Committee, but serving on the committee. Not only advising but acting.

Another quote – “Institutions (Organizations) can lead by stepping back.” I challenge you to take a long look at your center and whether your board has become insulated from those you serve. Can the center itself lead by stepping back and urging more people to do what needs to happen? Your center as an organization can convene groups, facilitate action, provide resources for change, partner with others…but if the desired action is something the citizens (consumers) can do for themselves, don’t displace their power.

More next week as we talk about asset mapping.