Friday, October 30, 2009

Good News Friday!

Sometimes, it is best to let the people we serve explain why what we do is so important. Take a look at the note below, sent to us recently from a family who receives a Family Support Grant from our Family Services department.

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

Defining the Definition Problem

Sometimes, definitions can be tricky. If we don’t fully understand the definition of something, we can become confused, just like Vizzini in “The Princess Bride.”

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
– Learn
– 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

Good News Friday!

Imagine! consumers (and talented artists) are taking part in an art class this fall with some very exciting projects.

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

Punished for Success?

About a week and a half ago, the Boulder Daily Camera had a feature story about our Bob and Judy Charles SmartHome. You can click here to see the story. It was really a great article and there was an accompanying video that shows the kind of technologies that are being used in the house to help individuals with developmental disabilities live fulfilling lives.

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

Good News Friday!

Imagine! consumers Donna Fairchild and Gerald Stopa are budding artists. Their work, and the way they create it, is so unique that the TV show “Colorado and Company” recently featured them in a live televised segment, along with art teacher Chris Murphy.

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

Considering The True Underserved Population

So many of the public pronouncements from government organizations, service providers, CCBs (including Imagine!) talk about how we serve “Colorado’s most vulnerable citizens,” meaning, obviously, people with developmental and cognitive disabilities.

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

Good News Friday!

At Imagine!, we are honored to be associated with so many talented and dedicated individuals who serve on the Imagine! Board of Directors and the Imagine! Foundation Board of Directors.

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.

Imagine! Foundation board member Sue Deans was honored as part of the Boulder Chamber of Commerce’s “Women Who Light The Community 2009.”

And the Longmont Association of Realtors has named Imagine! Foundation President Leona Stoecker as its Carl Turner Citizen of the Year.

Congratulations are in order for all three, and many thanks for all you do for Imagine!.

Wednesday, October 7, 2009

I Demand We Think About Demand Management!

It is time to start using Demand Management as part of a plan to provide services for individuals with cognitive and developmental disabilities here in Colorado and across the nation.

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?

Me: Exactly.