challenge


I’ve been concerned for some time that the global economic downturn might lead to a resurgence of institutions as models of “care” for people needing extra support to live in the community.  Sadly, I’m seeing that my fears are well-founded.

Today I opened the Wall Street Journal to an article titled “The Best Thing About Orphanages” by Richard B. McKenzie.  The author seems to know whereof he speaks, in that he references with some fondness his own childhood in an institution.  He doesn’t point out, but certainly could, that the child welfare and foster care system in the US can be the stuff of nightmares.

A few moments later, I cam across the Sacramento Bee news item that  financially devastated California is dramatically reducing funding to help support seniors and people with disabilities to stay in their own homes.  The budget crisis is all too real, and unquestionably some painful budget cuts must be made.  This decision, though, strikes me as rather severe.  Nursing home beds are expensive and scarce, the same Sacramento Bee article mentions that many other supports (the nutrition program, among others) are being eliminated.  The vulnerable are becoming increasingly marginalized.

I don’t doubt for a minute that all the people involved are trying to do the right thing–trying to balance competing priorities.  It is up to us, though, to lead the way and remind decision-makers of the practical consequences of policy decisions.  Despite the challenges, we must not return to the days of institutionalization.

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I’ve presented at conferences on the topic of the importance of social networking and social media for human services providers, and I have posted on this blog many times about our efforts at Keystone Human Services.  Now, many human services providers are on Twitter and Facebook, and it has me thinking about social networking and the people we support.  (For an example of the growing number of service providers on Twitter, see my list http://twitter.com/#/list/jbuford/intellectual-disability.)

People supported by human services providers are all vulnerable in one way or another—some only temporarily, others more systemically—and one of our important tasks is to shore up their areas of vulnerability.  Those efforts can sometimes lead to a blurring of the lines from a professional relationship to one that looks more like friendship.  The ethics of that are clearer in fields such as social work, psychology, and psychiatry (i.e. the principles of confidentiality and dual relationships)  than they are for the people who directly support people with intellectual disabilities, mental illness, autism, or other challenges in the community.  In this setting the guide posts are far murkier .

True to form, I have no answers to these myriad ethical dilemmas.  In fact, I don’t even have the questions.  I have a strong sense, though, that those of us who think we have an obligation to make sure our communities are welcoming to all people, need to think through the hazards, and the benefits, of “friending” people we support.    Already the digital divide disproportionately excludes many people from the community we all enjoy in the social media.

In my organization I’m putting together a diverse panel of people to begin to define questions and an ethical framework, but I’d like to have the conversation here in the social media as well.  Do you or your organization struggle to find the right answer to how to help someone with an intellectual disability navigate Facebook safely, without paternalism or odd blurring of lines?  Have you already answered questions about how to respond when someone you support “friends” you?  Please let me know how you are framing the questions, and maybe we can work together to craft answers.

Thanks!

imagesDaniel Henninger, the author of the Wonder Land column in the WSJ, wrote today (10-29-2009) about “Obama and the Old Hat People.”  Today’s column is about the current health care reform proposals making their way through the US Congress, and the current emphasis on dramatically expanding Medicaid alongside the much-debated “public option.”  Henninger places the thinking behind these proposals squarely in the “old hat” category, calling them “pre-iphone” proposals.

Leaving aside the politics or the persuasiveness of his argument, his use of “old hat” thinking and “pre-iphone” proposals got me thinking about old hat, pre-iphone proposals in human services.  In this field we are all too familiar with the Medicaid model and its myriad rules, regulations, complexities, compliance pitfalls, and frustrations.  15 minute billing increments, arcane rounding rules, encounter forms, eligibility change management, concurrent auditing, and much much more are part of the daily lives of human services delivery systems and the people we support.  They are also a part of the infrastructure –human and technological–that human services organizations must have to survive.  We all have software designed to manage the minutia of the rules.

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It just doesn’t get much more old hat than that.  

Most human services organizations are moving to service models based fundamentally on the individual being served.  We call it person-centered-planning, self-determination, or any number of other names, but we are often stymied by old hat bureaucratic thinking.  In this time of technological innovation and social movements based on an increasing ability for individuals to belong to disparate de-centralized groups (social media being a very important example) AND an industry movement toward personal choice, we still haven’t been able to be very new hat, have we?

New hat would be a service delivery and funding model based on individually developed service plans.  New hat would be an iphone app that removes the bloat and just delivers the information relevant to that person in that moment.  I’m circling back, I think, to an earlier post about the need for innovation in human services.

 I want us to be post-iphone.  

We need to be new hat.

As most readers already know, Yahoo recently apologized via Twitter for employing scantily clad woman as dancers, including lap dancers, at Hack Day in Taiwan.  If you missed this dust-up, both sides of the issue are covered (can there really be two sides to this conversation?) in the Reuters blog post “let there be lap dances” and Simon Willison’s blog post “this shouldn’t be the image of hack day.”  There are many others—just google Yahoo and lap dancing, and you’ll find them.  In my view, Yahoo’s behavior here was nothing short of shameful, and its apology was both late and banal.

What does this have to do with human services and technology?  A lot, actually.   Much of what we do in human services is predicated on the belief that all people have the right to participate fully in the community.  I spend a significant amount of time reminding people that “community” includes the online world, and I spend an equal amount of time reminding technology companies that the people we support deserve good online tools, have something to offer the technology community, and are an important customer base as well as source for future employees.

When technology companies as ubiquitous as Yahoo demonstrate that they don’t value women as customers or as employees, they are presenting a stultifying  view of who cares about technology and who is welcome in the technology community.  Yahoo’s apology said that this incident was not reflective of their values, and that it won’t happen again, but this is not the first time it has been part of their corporate “entertainment.”   Women are an important customer base for Yahoo, yet Yahoo marginalizes them.  How much harder is for us then, to get their attention regarding the needs of people on the wrong side of the digital divide?

Those of us working in the intersection of technology and human services need to have a stronger voice in reminding technology companies to be inclusive in all their activities.  Please take the time to hold companies accountable to a higher standard, and tell Yahoo what you think about the importance of sensitivity and diversity in technology.

thanks

Moldova, the Country of the recent “Twitter Revolution” is often referred to as the poorest country in Europe.  I am spending the week back in Chisinau, the capital city, where I have been several times over the past few years.  There Keystone Human Services International  has a small office and a staff of about ten people who are supporting several projects.

I am here with two colleagues from the US to implement Social Solution’s  newly acquired software TOTAL: Record, and despite the language differences (Romanian is spoken in Moldova) and despite the differences in human service systems models, I am delighted to report that the implementation is going very well.  As I mentioned in earlier posts, leadership is very important, and in accordance with that reality, I have travelled here with the CEO of Keystone Human Services International.  As in all implementations, that makes all the difference.

Strictly as an aside. Social Solutions refers to TOTAL:Record as “financial performance management” software for human services organizations.  In another post I’ll write about how they are seriously under-estimating the software product they acquired, but I’ll save that for tomorrow, I promise.  Suffice it to say that we are implementing it in Moldova, where medicaid reimbursement rules are not a driving factor. to say the least!

We are deep in the detailed struggles of all implementations—-how to define fields, activities, costs, etc.  It is the task of turning diffuse programmatic activities of helping people achieve full active lives in the community (rather than in institutions) into the bits and bytes of reportable data—-ie.  information.  I love this stuff!

This is a particularly fun project to be on—I am not usually so deep in the details of our software implementations anymore.  This one, though, will serve as a model and an inreplaceable information source for what we hope will be many more projects, so I am bringing in the most experienced staff and the most talented software application experst we have—under my watchful eye.  It’s good to be reminded how important valid and reliable information regarding human services can be; and good to be reminded of how rare it is.  I feel privileged to be doing this work.

By now you’ve heard about the White House’s new Social Innovation Fund.  It should be just what I was wishing for, since, after all, I’ve been using much of this space to lament the lack of innovation in human services.  

It all reminds me of the time I spoke at a large gathering about the progress of a particular nonprofit.  They were very proud of their progress and accomplishments of the preceding year, and asked me to speak about their plan to increase creativity and cooperation across the enterprise.  At first I was very skeptical.  The very idea of “planned creativity” caused a little chill to run up my spine.  But I was too quick to judge. 

What the organization had done was to thoughtfully plan to get out of people’s way so they could be creative on their own.  The organization brought no canned expectations or creativity outcome requirements to the exercise.  They simply got out of the way and let people create hundreds of small creative innovations that each changed lives.  

It was wonderful.

Perhaps I am too quick to judge here, too.  I would be more encouraged though, if it seemed that the federal government was going to get out of the way so nonprofits could innovate.  While the language the White House is using seems to be proposing a top-down approach, complete with all the innovation-strangling bureaucracy that only the government can impose, let us hope that there is still time to provide input and guidance.  Let us hope and encourage the White House not to prejudge the innovation, but to unleash the pent-up creativity of a vibrant nonprofit community.  We have so much to offer.

Allison Fine, whose blog I’m adding to my daily reading, seems to agree.  Let’s hope we can all make this work.

I’m blogging today from the PAR conference in Harrisburg PA.  PAR is a professional organization for Pennsylvania providers of services for people with intellectual disabilities and for people with autism.

Pennsylvania, like many other States, is revising the way it authorizes and reimburses for services, and the provider community, in some instances, is struggling to keep up.  Many human services organizations in this State simply haven’t needed to invest in systems until now; they could rely on the paper-based systems they had always used.  This creates an opportunity for all human services providers.

The opportunity lies in numbers.  If a large number of providers all need software tools at the same time, me have market leverage with the software companies.  As I written before, there is much room for improvement in offerings of our traditional IT vendors.  So, if you are one of the providers beginning your search for a software solution, I urge you to talk to your professional organization at the state or national level.  And if you are a professional organization, I urge you to prepare to guide your members through this process, and to demand improved performance from your tech vendors.  This may be the best opportunity we ever have!

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