Wednesday, December 30, 2009
Monday, December 28, 2009
In the same spirit, as I look forward to the New Year, I’d like to give a preview of some of the topics regarding the system of services for individuals with cognitive and developmental disabilities in Colorado and our nation I’d like to discuss in this forum.
Before I do that, though, I want to encourage all of you readers to make comments on my rants in the coming year. To push back. To tell me that I’m right when I’m right and that I’m wrong when I’m wrong. I’m not kidding when I say, “Then again, what do I know?” I don’t claim to have all the answers. Instead, I hope this blog can serve as a starting point for civil and productive discussion, not as the final word handed down from on high.
I hope you will join in the conversation as we explore complicated issues in 2010, including:
• Why I think we’ll see more examples of families and consumers facing dire circumstances as a result of system changes and funding cuts.
• Why we need to heed the advice I always give to my kids: “Don’t buy a car you can’t afford to maintain.”
• Why enrollment in employment services has dropped dramatically.
• What are we going to do with adults who have needs that can’t be met by the three models of residential care currently funded by Medicaid (PCAs , Group Homes, and Host Homes)?
• What the community can do to help alleviate some of the problems facing the DD system.
• How the fractures in our community make it more difficult to find lasting solutions.
• What role Case Management should play in service delivery.
• Whose problem is this anyway?
In the meantime, I hope you all have a very happy new year.
Monday, December 21, 2009
I’ve tried to be good this year, but you just never know. So maybe if Santa can’t deliver them to me, we can all work together to make the wishes on this list a reality, and not just for the holidays but for all seasons.
1) Those of us interested in solving some of the problems facing the system of service provision and delivery for people with developmental disabilities in Colorado work together to develop a synchronized, coordinated effort to address those problems.
2) We stop using a system of funding for people with developmental disabilities that emphasizes the disability.
3) We use Demand Management techniques as part of our service provision and delivery system so we can be more efficient in directing our limited resources to where they will be most useful.
4) We do a better job of serving parents of people with developmental disabilities (and click here for more).
6) Organizations serving individuals with developmental disabilities continue exploring how social media tools can help us better serve our consumers and stakeholders.
7) We continue to harness the power of community as we deliver our services (and click here for more).
8) All organizations and entities charged with serving some of Colorado’s most vulnerable citizens look internally to maximize efficiencies in service provision and delivery.
9) Most of all, I want an official Red Ryder, carbine action, two-hundred shot range model air rifle!
Just kidding about that last one.
Truthfully, the number one item on my wish list for Santa is that all of you out there have a safe and happy holiday season.
And that is one thing I do know!
Friday, December 18, 2009
Even in a year when so many Imagine! employees have gone above and beyond to serve individuals with developmental disabilities, there are a few among us who excelled so greatly that they were worthy of the title “Employee of Distinction.” We received dozens of nominations from throughout our organization for this honor, and it was not easy to narrow the nominations down to six.
Below you find the names of the six winners, along with a little information about what made their work so special in the past year, taken from their nomination. I think that when you hear some of what their coworkers had to say about them, you will agree that the six individuals selected as Employees of Distinction this year truly represent the best of Imagine!.
“I’ve repeatedly noticed that Wendy is always working with others, taking into consideration their unique schedules, needs, problems, and trying to come up with something that works. She devoted a fair amount of time to our department this spring to talk about our situation with all of our temporary employees, and she’s worked with us when we’ve been in unique situations that cause us to get into a scheduling knot. She seems to always be so level-headed, fair-minded, and willing to work things out.”
“Ben maintains a laid back and positive attitude everyday. He is very respectful when working with the adult participants, acknowledging that while they may have an intellectual disability, they are still adults and should be treated as such. He is kind, caring, and knowledgeable while on shift and upholds Imagine's! mission in his devotion to the participants.”
“Martha is continuing her friendly, caring ways as she learns her new job and assists consumers and staff in navigating the maze that is government healthcare. Everyone loves her and relies on her for the answers they need. She is a quiet, unassuming employee, but definitely the 'go to' gal in Innovations, without whom we would all be poorer and certainly less efficient!”
“Mandy is always looking for the “best fit” between families and therapists the very moment a service coordinator contacts her about a new referral. She asks service coordinators several questions in order to get as much information as possible and start making the best match. She does not just “plug in” a therapist who has space in their schedule. Making the best match possible up front contributes significantly to successful therapeutic outcomes for the child and family.”
“Gail is incredibly dedicated to the families that we serve at Imagine!. She shows a great deal of compassion for families in the many dealings she has over phone and email and often tries to problem solve how we can help them. Many times just listening to a kind voice on the other end of the line is all a person needs – I have heard over and over how many of our families appreciate how she does that with such compassion and skill.”
“Brian teaches our consumers perspective in our photography class. He teaches our consumers how to view the world with an objective mind. He takes his students into the community to observe and appraise, through the lens of the camera, the world they view. A premise of his class is that none of us is limited in life, that the entirety of our community is available to us if we simply take the time to engage with it.” Congratulations to all of our Employees of Distinction.
Monday, December 14, 2009
But I want to make clear that I believe that Imagine! is not exempt from exploring solutions to some of our biggest challenges. That is why the administrative team here is looking very closely at everything we do in order to maximize efficiencies in our service provision and delivery.
The reason for this is simple. Every inefficiency we have cuts into our ability to serve consumers and families. That is not acceptable.
Despite my misgivings about recent system changes and concerns about recent budget cuts, I do think they have produced an unexpected and potentially valuable side effect. All of us who provide services for individuals with developmental disabilities are being asked to provide the same amount of services while having access to fewer resources to provide those services. Funding has been reduced, expectations haven’t.
Facing this situation, we have a couple of options: ignore the expectations and provide lower quality services, or find ways to meet those expectations despite the challenges.
I’m proud to say that we at Imagine! have chosen the latter option, even considering the daunting nature of the task. However, this means that we will have to examine everything we do from top to bottom.
Here are a couple of examples of what we have already been doing to achieve the lofty goal of continuing to provide quality services despite a decrease in available resources:
I have already discussed our efforts to use social media to improve our communication with all of our constituents and to better engage the community in the conversation about our services. The early results of these efforts have been extremely promising, and as we move forward into 2010 we will be exploring how we can implement social media platforms across our organization.
We have also engaged in ongoing efforts to improve our data collection, storage, and access. As I have mentioned in an earlier post, we don’t have good enough data to even know what the most effective way to deliver services might be. At Imagine! we have been steadily upgrading our data systems and either eliminating duplicative databases or improving our ability to share data across platforms, with an end goal of having all the knowledge we need when making programmatic decisions in the future.
These changes aren’t easy, and often such difficult changes meet resistance, both internally and externally. However, I think they will be very beneficial to us in the long run. That’s why we’re working hard to inspire and motivate members of our staff every chance we get.
Our mission at Imagine! is to provide innovative supports and services for individuals with developmental disabilities. In order to meet that mission, I believe it is imperative that we never rest on our laurels or assume we have arrived, especially considering the challenging environment we find ourselves in right now.
Then again, what do I know?
Friday, December 11, 2009
Hunter Davis, a twelve year old student at Broomfield Heights Middle School, was with his dad when they came across the wheelchair next to a dumpster. They took the wheelchair home, having no idea what it was worth.
Hunter was crossing the street with the wheelchair attached to his bike when he encountered a Broomfield police officer, who inquired about the chair. Hunter explained he had found it next to the dumpster, and the officer said he wanted to check the serial number to make sure the chair hadn’t been stolen.
In checking the serial number with the manufacturer, Officer John O’Hayre and Sergeant David Walts discovered that the wheelchair was not stolen. Instead, it had belonged to a woman in her 90s who had passed away, and cost $3,000 when new.
Hunter could have sold the chair, but instead chose to donate it to Imagine! to help people with developmental disabilities.
“I just want the wheelchair to go where it will do the most good,” said Hunter.
The chair is in excellent shape, and has been given to F.R.I.E.N.D.S. of Broomfield so it can be utilized by people with physical limitations to assist them during community activities.
All of us associated with Imagine! express our gratitude to Hunter’s parents Greg and Debbie, the Broomfield Police Department, and especially Hunter. Hunter’s actions make him a role model and serve as an excellent example of community involvement.
Tuesday, December 8, 2009
In 1995, I wrote an annual update on Labor Source, outlining the fundamental philosophy of the organization. Labor Source was to be an organization for the community by focusing on the needs of the community as well as the needs of people who have a disability. Here’s more of what I wrote:
By accepting the definition of community membership as having similar interests and requiring contribution to common goals, we have established direction for a service that contributes to the common good of the community. Contributions by those we support verifies community membership. This direction for service and support contributes to further acceptance of people of all abilities.
The power of financial earnings is realized through greater opportunities for choice and enhanced quality of life. By utilizing our available resources to support this venture, consumers of our services, through their purchasing power, ultimately contribute dollars back to the community. Everyone benefits. People who have a disability exercise a greater degree of choice, and the community benefits from their role as true consumers.
Those words mean as much to me now as they did 15 years ago.
In those early days of Labor Source, we had a fundamental purpose that drove everything we did: engaging with the community so all could benefit. That purpose determined hiring decisions, directed program development, and ensured that all of our efforts included all interested parties including staff members, consumers, and the community at large. Our system of funding back then gave us the freedom to use that purpose as our guide.
But a significant change has taken place in funding for service delivery since then, and that change has made the fundamental goal of true community membership and partnership much more difficult to achieve.
Now, I believe service delivery in the DD world has much more to do with meeting Medicaid regulations than it has to do with providing community opportunities and involvement. So the purpose of what we do is completely backwards from what it used to be.
If our fundamental purpose now is to meet Medicaid requirements, success will soon be measured by how well we are able to bill for our services, instead of how many opportunities we are providing to our consumers. The community will be taken out of the equation, and we will begin to isolate and segregate individuals with disabilities. Bureaucratic-based decisions will outweigh people-based decisions.
We’ve been down that road before, and I don’t think anyone of us wants to go there again.
Then again, what do I know?
Friday, December 4, 2009
For those who don’t know, Labor Source is the vocational component of C.O.R.E./Labor Source.
My years working with the Labor Source team were some of the most important years of my life. Congratulations to everyone ever involved with this very vital service.
Tuesday, December 1, 2009
And there’s where we encountered a problem. The street we had to cross we pretty busy, and there was no good way to cross. Even at the closest intersection, there was no crosswalk, no cross signal, no real sidewalk, no nothing. It was as if the concept of a pedestrian just didn’t exist. We all felt like George Costanza trying to cross the street with his Frogger machine.
It made me appreciate the fact that I live in a community that actively embraces alternative methods of transportation.
So what does this have to do with the world of developmental disabilities? Well, it took me visiting a place that was so pedestrian unfriendly for me to realize how good I had it at home. And that started me thinking about community values and their importance. So many of us choose to live in communities because of what the community stands for. And that started me thinking about an aspect of the DD system in Colorado that perhaps we don’t give ourselves enough credit for: our unique, public/private community based system of services.
Many of Colorado’s organizations dedicated to providing services for individuals with developmental disabilities, including Imagine!, were started locally by family members who wanted their children to have the same opportunities to engage in the community as their friends’ and neighbors’ children had. Not surprisingly, the services that emerged reflected that local nature. These organizations may have grown and changed, but I think the fundamental philosophies of community based services remain. I also happen to think that is a good thing.
Anyone who lives in Colorado knows that the Boulder community and the Colorado Springs community are vastly different: different values, different attitudes, different outlooks. Because of the community based system of services we have in this state, those differences are reflected in the way services are provided to local citizens with developmental disabilities in Boulder and Colorado Springs. That seems to me to be to be a healthy approach that is good for the community and good for the individuals served.
I bring this up because we are at point where it is inevitable that the current system of service provision and delivery in Colorado will be questioned. If you read this blog you know that I am fully behind change, and I think everything we do needs to be examined to determine how to best meet the needs of those we serve in the context of severe restrictions on resources. During that process, however, I would urge us not to throw the proverbial baby out with the bath water. Let’s keep the philosophy that local communities are best able to determine how to protect their most vulnerable citizens.
While considering this modest proposal, ask yourself a few questions. Do you want a State regional system with a one-size-fits-all approach? Do you think the State is in a position to handle service provision? Should the State be involved in providing services at all? If not a State run system, then is there a model out there that will work better? Should providers be for profit or not for profit? Should advocacy groups be providing services? Where is the line that separates advocacy groups, services providers, and Community Centered Boards (CCBs)?
I don’t claim to have the answers to all these questions. But I do believe that our community based system is a good model that needs work. We should take the good parts and build on them as we re-imagine how we do business.
Then again, what do I know?
Friday, November 20, 2009
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
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.
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.
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.
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.
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
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
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
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
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?
Friday, October 30, 2009
We have been a recipient of Family Support Grants. These grants have greatly aided our family. Our primary use for these funds was to provide for respite care, Out & About (therapeutic services) and Out & About's Summer Camp.
We have two adopted, special needs adult children, making it very challenging to finance their care, in addition to the ongoing needs of the family.
Through respite care, these grants helped provide for our son’s expenses in Out & About, as well as to fund him for several days of summer camp. These programs allowed us to have time away from the pressures of ongoing care.
Additionally, we have used this money to cover some of the costs of our daughter’s harp lessons. Our daughter was diagnosed during foster care as having fetal alcohol syndrome, a very low IQ, failure to thrive, ADD, and a variety of other afflictions. We were told she would not be able to read or write. Through the dedicated care of her harp teacher, she can now read and write quite proficiently, and play harp. In fact, she has memorized quite a repertoire of music. The family grant has enabled us to continue these harp lessons.
We are very appreciative of the support our family has received through the availability of these grants.
Thanks to the Family Support team for making a huge difference in so many families’ lives.
Tuesday, October 27, 2009
I bring this up because we have a definition problem in the U.S.: how we define a developmental disability.
It seems like a standard definition would be simple, but of course it is not.
Here is how the federal government defines a developmental disability:
Physical or mental impairments that begin before age 22, and alter or substantially inhibit a person's capacity to do at least three of the following:
– Take care of themselves (dress, bathe, eat, and other daily tasks)
– Speak and be understood clearly
– Walk/ Move around
– Make decisions
– Live on their own
Here’s how Colorado defines a developmental disability:
A disability that is manifested before the person reaches twenty-two years of age, which constitutes a substantial disability to the affected individual, and is attributable to mental retardation or related conditions which include cerebral palsy, epilepsy, autism, or other neurological conditions when such conditions result in impairment of general intellectual functioning or adaptive behavior similar to that of a person with mental retardation.
It is not just Colorado and the Feds that have different definitions of what constitutes a developmental disability. Here is a quick breakdown of how states across the country define a developmental disability:
- 22 states use the Federal Definition
- 17 states use a definition similar to the Federal definition, except they either exclude or do not specify physical impairments or they do not specify that mental retardation (MR) is needed for eligibility
- Colorado & Minnesota’s definition states that the individual must have intellectual function or adaptive behavior similar to MR
- 3 states say the individual must have MR or Autism
- 6 states say the individual must have MR
So I am to take this disparity in definitions to mean that if I have a developmental disability and live in a state that uses the federal definition, and then move to a state that uses a more restrictive definition that doesn’t include me, I am suddenly “cured”? Of course not.
The different definitions don’t make any sense unless you consider that more restrictive definitions, such as Colorado’s, limit the number of people eligible for services and therefore lower the costs to the states for providing services.
Look, I fully understand the issue we are facing in regards to limited resources in the face of ever increasing demand for services. But creating artificial barriers for eligibility for services doesn’t actually change level of need for services. And having states create DD definitions (based on fiscal reasons) for what should really be a diagnostic definition is like fooling the media by making up a story about a six year old boy stuck aboard a homemade helium balloon flying across the country in order to be “. . . more marketable for future media interest.” It is just not rational.
You may have read my recent post about using demand management. In it, I point out that we don’t have good data regarding adult services in the state, or in the country. The lack of a unified definition of a developmental disability greatly contributes to that lack of quality data.
And you may have read my recent blog post about the lack of a synchronized, coordinated effort to address problems facing the DD system in our state and beyond. Yet again, the Heinz 57 approach to defining a developmental disability across the country only makes that challenge more difficult to overcome.
My suggestion? Create a single, nation-wide definition of what constitutes a developmental disability. If we really want to face, head on, the tough tasks ahead for providers of services to individuals with developmental disabilities, we need to start conversing using the same language. That’s not so inconceivable, is it?
Then again, what do I know?
Friday, October 23, 2009
This fall, every art class will be working on an international collaborative project called The Dream Rocket. Imagine! artists, together with thousands of others, will be designing panels that represent various “dream themes”. In early 2010, the panels will be sewn together to completely cover an actual Saturn V Rocket. This historical 30,467-square foot quilt will represent dreams from all over the world.
The Dream Rocket will symbolize not just the dreams of individuals, but also the power of global collaboration. The Saturn V Moon Rocket is the ideal example of achieving a dream that was considered ‘impossible.’ If we can work together to put a man on the moon, we can do anything.
Imagine! consumers will contribute four 2’x2’ panels made in various media to be a part of this global collaboration. They will be learning about and making art that has to do with big dream themes such as peace, the environment, and community. Around Christmas they will sew the final representations of dreams together and send it off to be a part of the Dream Rocket Project!
Additionally, Imagine! consumers are working on creating “Peace Poles” to be placed in front of several of Imagine!’s buildings. Peace Poles are handcrafted monuments erected the world over as international symbols of Peace. Their purpose is to spread the message “May Peace Prevail on Earth” in a different language, one on each side.
Tuesday, October 20, 2009
The online version of the story had a space for comments at the bottom. Most of the comments were very positive, but the first comment was, well, not so much. Here is a sample quote from that first post:
“Let me get this right.. $1 million to build the home. $65,000 PER year for each of the 8 residents.. That is over 1/2 a million dollars PER year... I am confused.. I am not at all saying these people do not deserve a home, much less one fitted to their disabilities.. But seriously. . . I am MORE than a little disturbed at this BLATANT waste of government funds when so many are in need…”
Believe it or not, the point of this blog post is not to debate the person posting the comment, although I do want to emphasize that the construction of the home was paid for entirely through private donations and grants, no funds designated for services were used to construct the home or outfit it with the technology, and that the $65,000 figure quoted is the average yearly cost for comprehensive services in our area, irrespective of whether or not an individual lives in the SmartHome, or one of our 16 other PCAs and Group Homes, or one of our more than 80 Host or Foster Homes.
Instead, I want to use this blog post to talk about why those of us in the human services field sometimes feel as though we have to apologize for being “too successful.” It reminds me of the movie “Oliver!,” when Oliver finishes his gruel and has the audacity to ask for more. The head of the orphanage is incredulous that anyone would ever ask for more.
On more than one occasion, I have felt like Oliver when I have been warned about showing off innovative ideas and programs like our SmartHomes project because it is “too nice.” People are worried that we will essentially get punished for our successes, because if the government agencies who fund us will look at how much we have achieved and figure that if we can be so successful with the amount of funding we get, then maybe we don’t need so much funding after all.
The system wants you to be poor, and we are supposed to be suffering.
I reject that notion. Like Oliver, I want more.
A key part of Imagine!’s mission is to create and offer innovative supports to people of all ages with cognitive, developmental, physical, and health related needs. I do not apologize for our organization’s wholehearted embrace of being innovative and looking for new and unique solutions to issues facing us all. I do not apologize for our organization’s ability to come up with ground-breaking programs in the face of extremely limited resources. And I certainly do not apologize for offering the individuals we serve the opportunity to live a full life, instead of a life where services are limited to the bare necessities and nothing more.
Mind you, I am realistic. I know that with the current system of funding and with significant waitlists for services, we can’t possibly offer this hypothetical great life to everyone. Resources continue to dwindle, and the taxpayers in Colorado have made it clear that they do not consider services for individuals with developmental disabilities to be a high priority.
But until the day comes that it is literally impossible, I will continue to push this organization and the great people who work here to strive every day for the very top when it comes to developing novel services. I will push us all to explore all options for new and inventive ways of funding these services. Either we are going to do quality work or we won’t do it at all. I can’t imagine any other approach, and I am honored to work with so many people who feel the same way.
Then again, what do I know?
Friday, October 16, 2009
Imagine!’s adaptive art class is a great example of our mission in action, so I congratulate Chris, Donna, and Gerald for their accomplishments, and thank them for sharing their experiences on TV.
Check out the video below.
Tuesday, October 13, 2009
I would argue that there is another group of vulnerable citizens, a group of people who are taking care of individuals with developmental disabilities, whom we are doing a poor job of serving: parents of people with developmental disabilities.
According to the Coleman’s Institute’s The State of the State in Developmental Disabilities 2008, “. . . 2.83 million of the 4.69 million persons with intellectual and developmental disabilities in the U.S. population in 2006 were receiving residential care from family caregivers. This “informal” system of residential care served about five times the number of persons served by the formal out-of-home residential care system.”
And what have we done to serve this population of caregivers? Sadly, not enough. As someone who has been in the field of developmental disabilities for some time, I find this quite disturbing.
When I was in school, we were taught a successful service for individuals with developmental disabilities revolved around providing them with the opportunity to live on their own, with support. Slowly but surely, the way we fund and provide services made a 180 degree turn, and now success is defined as keeping the individuals at home with family members for as long as possible.
Now, in another blog post I may debate the merits of that turn, but it has clearly happened, and as a society we have not stepped up to the plate to provide the necessary resources to those families who have taken on the task of caring for their adult child with developmental disabilities. And I’m not even talking about the looming specter of aging caregivers facing this nation, in this post, anyway. (In Colorado alone, 9,000 + people with developmental or cognitive disabilities live with caregivers 60 years or older – and that number is 716,000 across the nation – frightening!)
Anyone who has taken care of a loved one with a developmental knows that it is not easy, and can take a significant emotional and economic toll. So why have we been so bad at supporting these families who have made the tough decisions and chosen to care for their loved ones well into adulthood? Why do we expect these parents to be responsible for their adult children for so long?
Before you answer the above questions, think about this: pretend you have an adult child who goes down a bad path, commits a crime, and winds up going to prison. Does the State make you pay to imprison the child? Does the government say “you take care of him (or her)” and make the child stay with you? No, of course not. As a society we have collectively agreed to shoulder the financial burden of incarcerating those who choose not to follow our laws.
And yet, what do we do for those families who chose out of conscience to do the “right” thing? The ones who bear the significant costs of caring for their child, who, through no fault of his or her own, happens to have a developmental disability? Do we agree to shoulder that burden? Not even close. Understand, I’m not suggesting we incarcerate people with developmental disabilities to access government support. Rather, I’m just saying we might want to look at our priorities.
So to recap: you have a kid who grows up, goes bad, and goes to prison, and we sing “Come Together” by the Beatles.
Alternatively, you have an adult child with a developmental disability, who could contribute to society if given the proper tools, and instead we make the family sing “All By Myself” by Eric Carmen. Over and over.
Does that seem right? Even rational?
I don’t think so.
Then again, what do I know?
Friday, October 9, 2009
Recently, three of our extraordinary board members for were honored for their outstanding work:
Imagine! Board of Directors board member (and former board president) Dr. Jerry Rudy has been honored as a Professor of Distinction by the University of Colorado.
Wednesday, October 7, 2009
Let’s have a hypothetical conversation so I can explain more.
Hypothetical You: What exactly are you talking about?
Hypothetical Me: Let’s start with the basics: Demand Management uses strategies to control the demand for a fixed resource, rather than supply more of the resource.
You: Ummm . . . OK. What does that mean?
Me: You actually see Demand Management everyday. Here’s one example: have you ever tried to merge on to a major highway from an arterial road during rush hour? Chances are there were some traffic lights there to control how quickly you could actually get on the highway. Now, have you noticed that those traffic lights aren’t operating during slower times?
This is how traffic planners manage your demand for using the road. When the demand is the highest, they slow up access. Urban planners realized awhile back they can’t continue to add more lanes of traffic (supplying more resource) forever, so instead they focused on limiting availability of the resource (thereby controlling demand).
And those traffic lights on exits are only one example of how Demand Management works in traffic management. Transportation Demand Management techniques can also include increasing transportation choices, adopting land use patterns that encourage non-automobile forms of transportation, and trip reduction or carpooling programs.
Without Demand Management, we would potentially be facing traffic like this:
You: That makes sense. But why should Demand Management be applied to our world, the world of services for people with cognitive and developmental disabilities?
Me: Quite simply, we have a much higher demand for resources than we have resources available. That is the case in Colorado and across the country, and it isn’t going to be changing any time soon. And sadly, we don’t even know what the actual demand is. And because of that, we can’t really measure how to get the best rate of return on the limited amount of resources we do have, let alone explore other options of funding and service delivery.
You: Sounds great to talk about, but how would we ever actually make it work?
Me: There is already a successful model of how Demand Management can be used in the provision of services for individuals with cognitive delays and disabilities right here in Colorado: our Early Intervention (EI) Services. Every eligible child in EI is assessed for need, as well as on a hierarchy of specific needs. So the area of need that most requires addressing in each individual child is targeted first.
I’m not saying that every child gets everything they need, but every child’s needs are addressed. These can be tough choices, but in an environment of limited resources, those choices need to be made.
And because there is good data in terms of who needs what, opportunities have arisen to explore other funding options. In fact, federal guidelines recommend that IFSP planning teams explore possible funding sources for EI services that have been agreed upon by the team in the following order of priority: the general rule is that family resources, private and public insurance programs are first. Second are specialized programs for specific purposes and populations. Last are the most flexible state and federal funds that are used to fill the gaps.
Because they are practicing Demand Management techniques, the EI system has a good grasp on demand, and therefore can make reasonable projections regarding the costs to each of the above funding sources, and then determine what kind of services can be provided to whom.
You: OK, how can we make this work elsewhere?
Me: Well, here’s where I don’t have an answer. We do not have the knowledge we need in adult services to practice Demand Management. For example, how many people are eligible?; what are their assessed needs?; is the number of eligible people increasing?; are the resources increasing?; diversifying?; how does the need change as the eligible person ages?. To make informed decision about this system of services, the lack of this kind of knowledge is unacceptable. Then we can get to the tough question.
It is a tough question. Do we direct the limited resources to those who have the most need,?; those that have been waiting the longest?; the oldest or youngest?; Or do we direct resources to those with less need, but who may be better positioned to work or contribute with a little assistance?
Truthfully, this is a conversation that can’t even take place in real life because we don’t know the true demand well enough.
Hence, the hypothetical conversation.
But I would strongly argue that we should build Demand Management techniques into our services. We know the demand is way beyond than the available resources to meet that demand as the system is currently structured. We need to explore new options and approaches, and Demand Management has worked in other systems and might get us where we need to be next..
You: Then again, what do you know?
Friday, September 25, 2009
A lovely wedding took place on Saturday, September 12. Imagine! consumers Gerald Stopa and Donna Fairchild exchanged vows and celebrated their love for one another with a commitment ceremony at Donna’s church in Boulder.
The couple met six years ago during a social activity planned by their two separate Imagine! group homes. Romance bloomed, and now they have made a lifelong commitment to each other.
You can read more about the happy couple in this great article from the Longmont Times-Call.
Wednesday, September 23, 2009
I’m about to put that to the test.
I believe that the current system of funding for people with developmental disabilities through Medicaid is encouraging people to emphasize their disability.
Medicaid is designed and operated like an insurance company. Now, if you have insurance and, say, your roof is leaking, or your leg is broken, the insurance should help fix those things. And in general, once they are fixed, you are done – no more benefits are needed for that particular issue.
The problem in applying that model to developmental disabilities that for the most part, developmental disabilities last a lifetime. So we are stuck using a system that only throws money and resources at something that isn’t going away any time soon.
The goal of those of us at Imagine!, and I would argue most of us in the DD field, is to look for ways to provide opportunities for the people we serve to engage in their communities. It has been my experience that the best way to do that is to focus on a person’s strengths rather than the person’s weaknesses. Rather than identify lifelong deficits, find out what someone is good at, is challenged by, and enjoys, and build on that.
Here’s an example of what I mean: I’m not very good at throwing a softball. I never have been. I don’t know if it is a matter of my throwing mechanics or having a weak arm, but I just can’t throw a softball very far.
My lack of a strong throwing arm has not hurt me in my career, though. Why? Because I do have a handful of strengths and talents, they just aren’t softball related. I have been able to build upon those strengths to gain experience and knowledge as I worked in the field of developmental disabilities (instead of the softball field).
But what if Medicaid made the decision on what I should try and build on? Based on the current system, they’d try to teach me how to throw a softball better - even though no matter how much time, money, and energy they would spend, it is likely I’d never become a professional, or semi-professional, or even a very good amateur, softball player. What’s more, since I don’t much care about being a great softball player, I’d resent their lack of concern for my feelings and goals. And in the meantime, the strengths I did have would start to atrophy because too much focus would be placed on improving my throwing arm.
Maybe we’ve all been fooled by the movie “Groundhog Day,” where Bill Murray experiences the same day over and over, and each time he is able to work on each of his deficits and get the girl at the end of the movie. In the real world, however, it doesn’t usually happen that way.
I want to make clear that I don’t blame the Medicaid system. Medicaid was never designed to provide lifelong services focusing on the strengths of people with developmental disabilities. But in the past few years, the State gravitated toward using Medicaid dollars simply because they were available. Now we are trying to stick a round peg into a square hole by using that funding system rather than exploring new solutions.
My vision of how resources can best be used in service of people with developmental disabilities is not some pie-in-the-sky dream. Actually, this is how the system used to work in Colorado.
From 1997 through 2004, the state Joint Budget Committee (JBC), the Department of Human Services’ Division for Developmental Disabilities (DDD), the provider community, and the Community Centered Boards (CCBs) worked together to create a systems change plan for delivering services for people with developmental disabilities that would allow them to fully engage in their communities based on their needs, goals, and abilities. Since 2004, when it was determined that the state Health Care Policy and Financing (HCPF) would be the single state authority on many issues related the provision of services for people with developmental disabilities, and because of the intent of Medicaid from a federal perspective, that plan has been largely ignored. Resources were no longer viewed as tools designed to provide services to help people with developmental disabilities engage in their communities, they were instead viewed as insurance “benefits” payments based on a standard fee schedule throughout the State, paid out based on a person’s deficits.
The result? We are now serving 200 fewer people in the state (this reduction has nothing to do with the current budget issues). And even those being served are receiving fewer services.
We have gone 180 degrees from what we had, and now we are 180 degrees from where we need to be.
Invest our limited resources in the strengths of our consumers, stop throwing dollars down the drain by focusing on the wrong things, and focus on the right things.
Then again, what do I know?
Friday, September 18, 2009
Although I want this blog to be about big ideas in the world of services for people with cognitive disabilities, it is also an opportunity to share good news when we have it.
And today we have it!
Imagine! consumer and Out & About employee Kyle Sanchez has been named the Irwin Siegel Agency’s Direct Support Professional of the Year Award. I was told by the Irwin Siegel Agency’s representative that Kyle won by a landslide.
A little about Kyle (on the left in the photo), from an article in Imagine!'s employee newsletter a few months back:
Last summer, Kyle completed the online application for employment at Out & About, interviewed for the job, and completed all the required training. Kyle and his family were provided with information on the impact paid employment would have on his disability income.
Through hard work and an unbelievably positive attitude, Kyle succeeded in landing his very first job with Out & About working as an Assistant Recreation Instructor at the same camp he used to attend as a participant! Born with his own personal challenges, Kyle’s family enrolled him in Out & About while he was growing up.
As an Assistant Recreation Instructor, Kyle is expected to provide participants with the opportunity to successfully and safely access and participate in activities in their communities, to learn new skills, have fun, and to provide them with the opportunity to enhance their quality of life. Kyle’s job is no small task, and he has proven himself to be an independent, high achieving, and determined member of Out & About’s staff.
Kyle is a role model for many of the participants at Out & About. They look to him for guidance, comfort, and instruction. He has willingly taken on many new responsibilities that come with the job, and has done so graciously and with a smile! He handles schedule changes with ease, and is always aware of where he needs to be. Kyle asks meaningful questions and follows through with his job responsibilities. He is always on time, even when he takes the bus, which he has recently learned how to do on his own! Kyle notifies coordinators of any schedule conflicts as soon as they arise, and is always ready for the unexpected changes that often come with his job.
Over the past few years he and his family have experienced great loss. His father passed away, his mother was diagnosed with progressive MS, and his younger brother was also diagnosed with a disability. While maturing into a young man, Kyle has overcome many of his challenges while helping at home. Kyle feels very strongly that he needs to contribute financially to his family, and gaining paid employment helped him to achieve this goal.
Congratulations Kyle! Your honor is well deserved.
Tuesday, September 15, 2009
[looks at McClanahan]
Herb Brooks: Go ahead.
Rob McClanahan: Rob McClanahan. St. Paul Minnesota.
Herb Brooks: Who do you play for?
Rob McClanahan: I play for you. Here at the U.
Herb Brooks: Jack?
Jack O'Callahan: Jack O'Callahan. Charlestown, Mass. Boston University.
Those of you who know me already know that I find many of life’s most powerful lessons can be found in movies. I often find myself watching the same movie many times and each time being moved by the message and the lesson.
Herb Brooks: How about you?
Mark Pavelich: Mark Pavelich.
Herb Brooks: Who do you play for?
Mark Pavelich: UMD Bulldogs
I mention this because I recently re-watched the movie “Miracle” about the 1980 U.S. Olympic Hockey team. In the movie (and in real life) coach Herb Brooks took a bunch of rag-tag college hockey players and formed a cohesive team that took on the incredibly powerful Soviet Union hockey team and defeated them en route to a gold medal.
A quick history lesson for you youngsters – at the time, only amateurs were allowed to play hockey in the Olympics, and the Soviet Union, not having any professional leagues (and not allowing their players to leave the country), were able to field incredibly talented teams with a roster full of players who would have otherwise been playing in the NHL if politics would allow it. So generally, the Soviet teams dominated Olympic play, acting as the Harlem Globetrotters to the rest of the world’s Washington Generals.
Herb Brooks: How about you?
Dave Christian: Dave Christian.
Herb Brooks: Who do you play for?
Dave Christian: University of North Dakota.
Why was the 1980 U.S. team successful against such a powerful opponent? In a word, teamwork. Coach Brooks used some unorthodox methods to develop an intense cohesion among the team where the team was paramount, and all the players bought into the system.
Herb Brooks: What's your name?
Mark Johnson: Mark Johnson.
Herb Brooks: Where you from, Mark?
Mark Johnson: Madison, Wisconsin.
Herb Brooks: Who do you play for?
Mark Johnson: University of Wisconsin, Coach.
So why am I blabbering on about this movie in a blog dedicated to issues surrounding cognitive disabilities? Because I feel strongly that one of the issues that has made it so difficult for those of us in Colorado to come up with real, sustainable solutions to the myriad problems facing us all is the lack of a synchronized, coordinated effort to address those problems.
There are groups focusing on various diagnoses (Autism, Down Syndrome, Traumatic Brain Injury, etc.), groups and sub-groups for various providers and Community Centered Boards, groups of families and parents, all of whom take many different viewpoints and approaches.
Now, I don’t expect that we will all agree on everything, but I do worry that the fractured approach we take now to address some very complex issues pretty much guarantees that no lasting solutions to the great crisis facing the cognitive disabilities system in Colorado will be found. So much of what we do becomes an issue of “protecting our turf” rather than looking for opportunities for change. Separated, our voices are small and easy to ignore.
As a result of our dividing ourselves, we are conquering ourselves.
So I think it is time to take the Herb Brooks approach. Come together as a team. Find our common ground and work from there. It won’t be easy, but in the long term we could find that we are much stronger together than we are apart.
Mike Eruzione: Mike Eruzione! Winthrop, Massachusetts!
Herb Brooks: Who do you play for?
Mike Eruzione: I play for the United States of America!
Then again, what do I know?