Friday, November 20, 2009

Good News Friday!

Next Thursday, Dave Query, owner of Big Red F Restaurant Group, will be donating a complete Thanksgiving dinner to over 400 Imagine! clients and their families. This is the 6th year that Dave has hosted this special event.

That is not all that Dave has done for us. Though he owns and operates six restaurants and is father to three teenagers, he still found time to serve on the Imagine! Foundation board, and has held many fundraising events to benefit Imagine! in his restaurants, including Jax Boulder Oyster Eating Contests and Zolo Grill’s Zololympics.

Dave has also hosted luncheons and wine tastings for prospective donors at Rhumba, and donated the catering for board get-togethers and fundraising events in private homes.

Most of all, Dave has shared with Imagine! and the Imagine! Foundation his passion, integrity, and generous spirit. We are most grateful.

Thanks Dave, for all you have done for Imagine!.

Monday, November 16, 2009

Family Matters

In this blog, I’ve already talked about how I think that families are the truly underserved population when it comes to services for individuals with developmental disabilities. I’d like to expand on that today, and pose a couple of questions. Are parents of children with developmental disabilities reluctant to discuss the impact it has on their lives, and does reluctance this contribute to a lack of understanding of issues surrounding developmental disabilities in the community?

I’ve been in this field for more than twenty five years. Despite that, I don’t claim to truly know what it must be like to have a child with a developmental disability. But I do know these two things:

1. Most parents I meet love their children unconditionally and are more than willing to do whatever it takes to ensure that their child with a developmental disability has the opportunity to succeed to the best of their abilities and desires, and

2. Having a child with a developmental disability can potentially impact a family negatively in a variety of ways.

For some examples of the potential negative impact, take a look at the information below from the love to know website about the impact having a child with autism can have on families. I think these factors hold true for families with children who have other cognitive and developmental disabilities as well.

Emotional Impact
Autism is an emotional roller coaster ride that begins before diagnosis and continues throughout life. Parents and other family members of autistic children often feel alone, isolated, and ignored before receiving a diagnosis. Upon learning that their child may be autistic, emotions may fluctuate between the relief of finally knowing what is wrong, to the despair that the child suffers from a disability with no known cure. Following diagnosis, confusion, guilt, anger, depression, and resentment may occur. Anger and guilt can be devastating to marriages and other family relationships if not dealt with promptly. Faced with a lifetime of challenges, family members may become depressed or even suicidal.

Social Impact
The isolation experienced by families of autistic children can be severe. Isolation may occur for a variety of reasons and leave parents lonely and depressed. Many parents have a difficult time socializing with parents of "normal" children, and some may feel they no longer have anything in common with the social circles they were once involved in. As the autistic child grows older, and the difference between him and his peers becomes more obvious, the isolation often becomes extreme. Friendships may dissolve as caretakers abandon hobbies and outside interests.

Physical Impact
Anxiety, depression, and exhaustion all take a toll on the physical health of autistic families. Long days of appointments and therapy sessions, repeated calls to the school for meetings and conferences, and a chaotic household can leave parents of autistic children feeling fatigued, stressed out, and irritable. Hectic schedules and unusual meals planned around the child may lead to vitamin and mineral deficiencies, and sleep deprivation may result in difficulty concentrating, memory impairment, and other health complications.

Financial Impact
The financial impact on families of autistic children is enormous. Most private health insurance plans do not cover all expenses related to therapy and treatment for autistic children, and the co-pays for office visits and medications often results in huge financial debt. Moreover, it is often extremely difficult for both parents to continue working full-time, which means a reduction in household income to go along with the increased expenses. Without financial support, many families of autistic children end up in debt, with many losing their homes due to foreclosure or bankruptcy.

And yet, I find that many of the parents I interact with don’t want to discuss that part of their lives. They will advocate tirelessly for their children and offer gentle (and occasionally not so gentle) suggestions, ideas, and critiques of the services their children are receiving. But they usually won’t talk about the impact on them.

I think this has something to do with the stereotypes surrounding families of children with disabilities. I recently came across a quote from Dr. Ray Barsch, a pioneer in the field of learning disabilities, regarding the no-win situation families with a child with developmental disabilities face in their interactions related to their child with others:

“If the parent is militantly aggressive in seeking to obtain therapeutic services for his child, he may be accused of not realistically accepting his child's limitations. If he does not concern himself with efforts to improve or obtain services, he may be accused of apathetic rejection of his child. If he questions too much, he has a "reaction formation" and may be over-solicitous. If he questions too little, he is branded as disinterested and insensitive.”

You can read more here.

Although that quote is from 1968, I suspect that it still holds true even today. And I further suspect that because it holds true today, parents are even less inclined to talk about their own issues since even discussing their child’s issue can be so difficult and perplexing.

I say I suspect that is the case, but I’m not sure. I would welcome comments from families to help me better understand.

The reason I want to understand better is because I think there is a lack of awareness in our community of the true and complete impact that having a child with a developmental disability can have on a family. This lack of awareness impedes our ability to promote our cause and issues beyond the relatively small DD community in Colorado. You need look no further than the failure of Amendment 51 last year to see that we haven’t been very successful in getting the word out.

We all know that politicians on both sides of the aisle claim to value the importance of family and are always at the ready to champion family issues. Perhaps if we were able to bring family impact into the equation as we search for long-term, sustainable solutions to the crisis facing the DD world in our state and beyond, we might be able to gain a bit more traction.

As I prepared this blog entry, I remembered a local story from a father of a child with significant needs. I recall it struck me not just because it was heartbreaking, but also because it broached the subject of family impact in a way I rarely encounter:

"Now, for the first time I have little hope. In the not-so-distant future, (my son’s) affliction will likely present us with a crisis for which there is no solution other than the destruction of our family."

Maybe if more people were able to see those words, and truly grasp that when a family falls apart it negatively impacts the entire community, they may not be quite so quick to dismiss our DD issues by assuming they are somebody else’s problem.

Then again, what do I know?

Friday, November 13, 2009

Good News Friday!

I often find myself amazed at the talents and abilities demonstrated by some of our consumers. Given the opportunity, many of the individuals we serve have created stunning works of art.

If you would like to see first hand some examples of what I’m talking about, here are a couple of upcoming options:

Imagine! consumer Chris Donley is selling his pottery during the Boulder Potters Guild sale at the Boulder County Fairground in Longmont, CO. The fair runs today, tomorrow, and Sunday. For more information on the sale call the Potters Guild at 303-447-0310.

The following weekend, there will be a Holiday Craft Fair on Saturday, November 21, from 9:00 AM – 4:00 PM at the Carbon Valley Recreation Center, 701 5th Street in Frederick, CO. Consumers receiving services from Imagine!’s C.O.R.E./Labor Source art classes are selling their art at the fair.

Please consider visiting one (or both) of these events and supporting our skilled artists. I suspect you’ll discover, as I have, that the talent level we have among our consumers is astounding.

Tuesday, November 10, 2009

Getting Social

This past Friday I had the privilege of attending the American Network of Community Options and Resources (ANCOR)'s Technology Leadership Summit. The summit was held right here in Boulder, CO, in collaboration with the Coleman Institute’s 9th Annual Conference. The event was well attended, and summit attendees were given a tour of Imagine!’s Bob and Judy Charles SmartHome to see first hand how technology can positively impact the lives of individuals with developmental disabilities.

And the very end of the summit, there was a discussion about social media and how organizations serving those with disabilities could use some of these Web 2.0 tools to better communicate with (and better serve) their constituents.

At Imagine!, we have embraced social media wholeheartedly (not just this blog – we have Facebook pages for Imagine! as a whole, for our SmartHomes project, and for our Out & About department, and we have a blog and Twitter page for our SmartHomes project), so I was a bit surprised to hear that there was a lot of resistance to using these new tools among some of the attendees present for the discussion.

Below are some of the concerns and objections I heard during the discussion on Friday, and some thoughts I have as to why those concerns and objections, while sincere, may be missing the bigger picture of what social media can bring to the table.

Using social media will make our employees less productive – they’ll spend all day talking to their friends!
Believe it or not, I remember hearing the exact same argument some 15 years ago when we proposed setting up an email system at Imagine!. I think you would be hard pressed nowadays to find an organization that does not use email for a substantial portion of their communication. I firmly believe that we are at the beginning of a new shift in how organizations will communicate, and social media tools will be the platform for that communication. I can already see how these tools can actually improve employee production, disseminate information quicker than before, and lessen the chance that bad information travels too far.

And frankly, those of us in the field of developmental disabilities trust our employees with the lives of our consumers. If we do that, surely we can trust them to use new tools available to them for the good of our organizations, right? If not, then they probably shouldn’t be working for us in the first place.

What about privacy and protection for our organization? This will jeopardize those!
I guess the question in response to this concern is “What do you have to hide?” Using social media makes your organization more open and transparent to its stakeholders. Families, consumers, donors, government entities, and other constituents can find out about your organization in a quick, easy way. More importantly, they can engage in the conversation about the direction of your organization. Maybe they have ideas we haven’t thought of – and they’ve never been given them a platform to suggest those ideas. Social media provides that platform.

It seems to me that we have an obligation to the individuals and communities we serve to let them know how we are doing. Social media provides a very real, tangible way to share information and engage in genuine discussion. We’re all better off when that happens.

What about consumer exposure? Don’t we put them at risk?
I understand this concern, but I think it misses the point.

Off the top of my head, I can think of ten different organizations serving individuals with developmental disabilities here in Colorado who use the word “community” in either their mission statement or even as part of their name. It is in Imagine!’s mission statement. It is what the “C” stands for in ANCOR. We all want to provide the individuals we serve the opportunity to engage in their communities in meaningful ways.

Well, social media is all about community. There are groups out there on the internet for every interest, hobby, or pastime you can think of, and a lot more you probably never thought of. And technology has made accessing those communities relatively easy, even for those with significant disabilities. So it doesn’t make a whole lot of sense to me for organizations with a stated mission of providing community access and opportunities for people with disabilities to not at least explore this new avenue of access to communities.

Am I saying having consumers engage in social media is a risk-free endeavor? Of course not. But neither is taking a consumer to the recreation center, or to a baseball game, or even to work. We all accept those risks as part of what we do because we think it is important to provide opportunities for community interaction, and we take steps to mitigate those risks. I don’t see why we can’t do the same for social media.

And here’s an even more important consideration, one that in my mind is the main reason we should be encouraging consumers to use social media. In the virtual world, a person’s disability is invisible. Say, for example, a consumer joins a Facebook group dedicated to the Denver Broncos. All the other people in the group just see the consumer as a fellow fanatic – someone just like them. The consumer can engage in these online communities and conversations without barriers and without judgment. To me, that meets Imagine!’s (and I suspect most of our organizations’) mission and goals in an incredible powerful, and empowering, way.

At Imagine!, we’ve only scratched the surface in terms of what we could be doing with social media. But even our small efforts have had big successes, and I’m looking forward to bigger and better things as we explore this medium more fully.

Below is a list of some other blog posts about social media and the non-profit world. Even if you organization is for profit, there is still a great deal you can learn from the information presented. I encourage anyone who is interested to explore more. Don’t get caught behind the curve – start exploring now to learn how these tools can help you better serve all of your stakeholders.

Then again, what do I know?


How Non-Profits Can Use Social Media

Helping Nonprofit Managers To Overcome Fear Of Social Networks

Social Media Tips

Social Media for Nonprofits Before You Jump In with Two Feet – Important, Boring, Basic Stuff First

Five Things To Do With Your Nonprofit Blog

Ten Things a Nonprofit Should Do Before Setting Up Social Media

Twitter for Nonprofits and Fundraising

Friday, November 6, 2009

Good News Friday!

Those of you who are familiar with this blog know I have talked about some of the serious challenges facing the DD system in Colorado.

I think it is important to also acknowledge that despite extremely difficult times, with economic troubles and system changes colliding to create a perfect storm of issues, there are many people working at many levels to ensure that Colorado citizens with developmental disabilities are able to contribute to this great state of ours.

Today I want to take this opportunity to bring to your attention to two of those people. The efforts that Governor Bill Ritter and his Director of the Office of State Planning and Budgeting, Todd Saliman, have made to protect the services for people with developmental disabilities have been monumental. Over the past year, the State budget has needed cuts of $1.8 billion, then in August an additional $318 million, and then September revealed and additional $589 million shortfall. During this time, the Governor repeatedly expressed his desire to continue services to the more vulnerable citizens of Colorado. I believe he has been true to that promise.

During the most recent cut of more than $280 million to the State budget, our services were again kept intact. I have personally spoken with Todd and thanked the Governor and him for this effort. We know that there will be more difficult times coming next fiscal year, and it will be unlikely that our services will go unscathed. In the difficult financial situation in Colorado, we understand that everyone and every program of services will be part of the solution.

Thank you, Governor Ritter and Todd!

Tuesday, November 3, 2009

Paid in Full?

I have often discussed “challenges” that the developmental disabilities service system in Colorado faces. Today, I’d like to talk about one specific challenge.

In 2007, an independent study funded by the State of Colorado indicated that the cost of providing residential and transportation services exceeded the availability of state resources. In other words, the state cannot afford the average cost of services.

By how much? At the time of the study, the shortfall equated to 86.1 cents on the dollar.

This means that for every $1.00 worth of expense a service provider incurs, the State pays the provider 86.1 cents.

Keep in mind that this study was concluded before the most recent 2.5% provider rate cut the State made as part of their overall budget reductions. And I don’t think I’m going too far out on a limb to say it is likely that more cuts loom on the horizon. I predict soon we’ll be close to receiving only 80 cents for every dollar’s worth of services provided.

Service providers contract with the State to provide services in full. But we aren’t paid in full.

So what happens because of this shortfall? Well, some service providers stop providing services because they can’t afford to do business anymore. At Imagine!, we’ve already lost four service providers since the beginning of this year.

Or, we may see service providers moving services operations to geographical areas where it isn’t quite so expensive to run a business. This could mean that even though you may live in Denver, your adult child receiving residential services may be forced to live somewhere like La Junta. This isn’t necessarily a bad thing, certainly for the wrong reason.

Right now, though, most service providers continue to fight the good fight and provide quality services despite the cuts. They’re like the Black Knight in the movie Monty Python and the Holy Grail.

But just like the Black Knight, it will get to the point where providers can’t fight any more, even if they wanted to. No organization can continue forever when underfunded to the tune of close to 20%.

Look, I get it. All the service providers get it. We are in a recession. We’re not going to be seeing any new money for services any time soon.

That is why it is so imperative that we stop being the Black Knight, and instead start thinking more like brave King Arthur and begin a search for our own Holy Grail - new ways of funding and providing services.

Then again, what do I know?