Written by Mark Emery, CEO of Imagine!, with the creativity of Fred Hobbs. This blog is meant to discuss ideas of interest in the world of Intellectual Disabilities in Colorado and beyond. The blog is a “safe zone” where discussions are open and honest, and new ideas and new ways of looking at things are encouraged.
Most Tuesday mornings at Imagine!’s Lafayette office building, visitors to our kitchen area are greeted by a group of employees from Steamers Coffee Shop selling coffee, tea, and other goodies. Steamers is not your average coffee shop. Steamers proudly counts among their employees many individuals with developmental disabilities.
If you read my blog on a regular basis, you know that I consider supported employment to be mutually beneficial for the consumers who work hard for their paychecks, the businesses that learn from a diverse work crew, and the community members who can see first hand the contributions individuals with developmental disabilities are able to offer if given the chance.
So I salute Steamers for their vision that it is possible to run a business which is sustainable, successful, and employs people with developmental disabilities, while offering their community a high-quality product. Keep up the good work, Steamers!
That’s what I think whenever I contemplate the funding system we use for providing services for individuals with cognitive, developmental, and intellectual disabilities.
Let me give you some background.
Medicaid is the primary program in the United States for funding residential programs in the United States. Depending on the state, the federal government shares 50% to approximately 78% of the cost of these services.
The part of Medicaid that serves (poorly, as you will see) as the baseline funding mechanism for adults with developmental disabilities is designed to provide care in what are known as Intermediate Care Facilities (ICFs). Medicaid’s ICF program was enacted in 1971 and generally funded large public and private congregate and institutional settings.
Very quickly it became evident that this was a bad approach to providing services. Study after study demonstrated that for the vast majority of consumers, services offered in community settings were more efficient and effective, and became recognized as “best practice.” I think most of us in the field would also agree that providing services in the community is a mutually beneficial system where the consumer and the community both win. Furthermore, ICF funding was shown to be inflexible in addressing needs that are non-medical in nature.
As a reaction to the obvious shortcomings of the ICF program, in 1981 Congress passed a law which authorized the Secretary of Health and Human Services to grant Home and Community Based (HCBS) Waivers to support services to people with developmental disabilities who were at risk of institutionalization.
The result of this action should not be surprising. The waiver programs grew exponentially (by 1990, there were 150 waiver programs across the country) and have now become the primary source of financial support for services and supports for individuals with intellectual disabilities. Take a look at the chart below to see the growth of waiver participants since 1982.
And a little less than a decade ago, HCBS waiver spending surpassed ICF spending.
So this is a good thing, right? Well, from a services standpoint, yes. More and more people get their services in a natural environment. But from a funding standpoint, the waiver system leaves much to be desired.
Why? Because by their very definition, waivers are considered to be “exceptions” to the baseline ICF program. So they tend to be created and implemented in a bit of a vacuum – addressing a singular issue or a few small issues with little regard to taking a more universal view to services. Rules and regulations differ from waiver to waiver, creating a bureaucratic nightmare that is difficult for even seasoned professionals to navigate, to say nothing of the effects on the end-user. There is no cohesion.
The system of funding we have now revolves around all the “exceptions,” which, when looked out in total, actually make them the “rule.” The logic to the system is lost when the exception becomes the rule. The waivers are designed to prevent institutionalization, while the ICF program they are “waiving” is designed to encourage institutionalization. It is completely backwards and incredibly inefficient. Considering the desperate need for services facing our nation, and the equally desperate lack of resources to provide those services, the funding system needs to be overhauled from the top down.
In a blog post last week, I discussed the need for those of us in the DD field to collaborate with the academic community to find answers to the myriad problems we are facing. I think an academic study looking at new ways of funding services in our field, taking a comprehensive view and using community based services as the baseline would pay dividends now and well into the future.
Imagine! is a community organization. All services provided by Imagine! reflect community values and lifestyles and support community integration. That is why it is so important for us to be out in the community and sharing information about the resources we have available to individuals with developmental disabilities and their families.
Imagine!’s Public Relations team works to create awareness about Imagine! in variety of cost effective ways, including searching for public speaking opportunities or to have information booths at various community events. As a result, Imagine! is constantly out in the public letting folks know about the good work we do and how we can assist some of our most vulnerable citizens. Take a look at how, in just the past few months, Imagine! has engaged in a wide variety of public outreach efforts:
In January, presentations and attendance at local fairs included participation in the Erie Business Expo and the Boulder High School Martin Luther King Day Resource Fair.
In March, Imagine! team members attended the Broomfield Community Foundation’s Heart of Broomfield event. Imagine! was a recipient of a grant from the Foundation and information was shared with attendees about how those funds were benefiting Broomfield citizens.
So don’t be surprised if you are at a community event somewhere and see that Imagine! has a presence there. We’re working hard to keep the community informed!
The other day I was flipping through my television in a never ending quest to see what else was on, and a came across the classic Rodney Dangerfield movie “Back to School.” I tuned in just in time to see the scene where he executes the “Triple Lindy” off of the diving board.
The scene always cracks me up, not because the scene itself is funny, but because the stuntman who is actually doing the dive doesn’t look very much at all like Rodney Dangerfield. The editing between actual shots of Rodney and the stuntman make that fact abundantly clear.
Anyway, it started me thinking (again) about how those of us in the DD field could greatly benefit from some outside perspectives on to solve some of the difficult issues we are facing – specifically, we could use some input and assistance from the academic world (the movie was Back to School, after all). Perhaps some outsiders, without a dog in the fight, might be able to help us find a new and better way to do things.
At Imagine!, we have taken some small steps in that direction. For example, our Case Management department recently brought on an intern to help create and conduct a survey of families in our area who have a loved one with a developmental disability who is currently on a waitlist for services. The survey was conducted to assist us in the process of determining what needs Imagine! can meet for that large and ever growing list of individuals who are eligible for services but have no funding for those services.
Going a step further, our Out & About department has developed an entire internship program, partnering with universities across the country to place interns at Out & About in the fields of therapeutic recreation, education, sociology, and psychology. This program has a positive impact in two ways. First, Out & About is able to stay abreast of the latest advances in the field and use that knowledge to continually refine its community-based programs. Second, the interns have an opportunity to learn in one of a very few non-clinical settings using community-based recreation for people with developmental disabilities and to use that knowledge as they move forward in their careers.
As pleased as I am with our efforts to date, I feel as if there is so much more that could be achieved through using our nation’s system of colleges and universities as a resource in addressing some of the vexing issues we face in the DD world. Those of us at Imagine!, and those of us in the field across the state and the nation, need to do more outreach to the academic world in our search for solutions. In particular, wouldn’t it be a great study to determine from our national and state efforts, what is the most cost effective funding and service delivery design available? We know states design services based on available Medicaid resources to allow services to be delivered in the least restrictive environment. Is this the most effective use of available resources?
I am aware of many universities that have staff members or even entire departments specializing in intellectual and developmental disabilities, unfortunately, I am often surprised that this subject matter is not a point of academic interest.
So why can’t we collaborate with the academic world to study an issue such as how funding streams work in the DD world, and have the researchers suggest new options and approaches? Clearly, this is a problem that has confounded us in the field in the past, and has led to some of the big issues we are facing now. Potentially, collaborating with an outside party would offer those of us in the field a fresh perspective, while at the same time afford a team of academics the opportunity to have a genuine impact on such an important issue. I will drill down into this issue with more curiosity next week.
Many opportunities exist for partnerships for those in human services fields and those in academic circles. We need to work toward creating those partnerships now to benefit us all.
Activities include fishing, equine assisted opportunities, art exploration, swimming, sports and games, gardening, as well as lots of scheduled field trips to local venues such as Water World, Elitch Gardens, and The Wildlife Experience. Out & About’s goal for their Summer Camp Program, and for all their programs, is to provide a sense of acceptance and self among peers, to enhance participants’ quality of life through the development of socialization skills and coordination skills, and to promote community integration.
The promotion of community integration is a cornerstone of Out & About’s philosophy, a philosophy that mirrors Imagine!’s mission. 91% of Out & About’s services are offered in the community and do not involve a base-site or segregated setting. Out & About management and staff members firmly believe that the best way to find and cultivate a sense of community is to actively participate in the community as much as possible, and that the community affords the best opportunities for learning and success. Take a look at what the Out & About website says about community integration:
Being community inclusive presents us with exciting opportunities. Providing community based services enables our participants to be included and welcomed in society, as well as enriching surrounding communities by encouraging tolerance and acceptance of all. However, being community inclusive does not occur without challenges. There are, of course, times when not everything goes as planned, and we adapt and adjust. Out & About embraces these teachable moments as they may arise in an authentic environment. Learning how to adjust to transitions and the unexpected are valuable life skills that can be taught through the community.
I couldn’t agree more, and I’m looking forward to another successful Out & About Summer Camp this year. To everyone at Out & About, thanks for all you do and keep up the good work!
One of our goals at Imagine! is to provide opportunities to the individuals we serve to live as independently as possible. A person’s ability to live an independent life is directly related to their ability to travel throughout their community.
That is why we are so pleased to be associated with Special Transit’s Easy Rider Program. This program helps seniors and people with disabilities expand their travel options in Boulder County. The travel instruction program is designed to assist people in learning how to safely and confidently use public transportation (RTD and Call-n-Ride).
Since the Easy Rider program began in 2003, 62 Imagine! consumers have enrolled in this program and successfully learned how to ride the bus by themselves.
The registration fee for this one-on-one training is only $25. Before the program begins, an expert instructor conducts an in-home assessment with each individual to get acquainted and help determine the person’s needs and goals. Travel sessions are then scheduled to provide first-hand experience riding buses in the community. Each individual’s needs and abilities are different, so the amount of practice time varies from person to person.
Program training includes planning a bus trip using a route schedule and map, getting on and off buses using the proper fare, identifying landmarks, transferring from one bus to another, and using safe pedestrian skills and stranger awareness.
Imagine! consumers make up 28% of the referrals that Special Transit gets for this program, and we are well aware of the powerful positive impact the program has on our consumers’ lives.
For more details on the Easy Rider Program, contact Susan Unger, Special Transit’s Travel Training Coordinator at (303) 447-2848, ext. 105.
We’re a little more than a week away from the deadline for Americans to file their tax forms, and either pay what they owe or await a refund.
There are a variety of ways a person can complete tax forms. They can do themselves. They can purchase software to assist in filing. They can hire a professional. Which method a person chooses often depends on the complexity of their tax needs.
Why am I starting this post on such a boring and unpopular subject? Well, our tax system can be complicated and at times very difficult to navigate (I’m looking at you, State of Vermont Department of Taxes website), and yet many individuals and couples find that it is not so complicated or difficult to navigate that they can’t still prepare their taxes on their own, without professional assistance.
In the DD world, not every family or individual’s needs are so complicated that they need a professional to intercede on their behalf when researching and procuring services. Despite this fairly self evident fact, Medicaid waivers for services for individuals with developmental disabilities mandate that anyone who receives services, regardless of the complexity of those services, must have a professional Case Manager assist them.
Yes, the system of funding and delivery services for individuals with intellectual disabilities is complex. But is anyone willing to argue that it is more complex than our tax system? I wouldn’t think so. And if many individuals and families can navigate the tax system on their own, surely they can navigate the DD system on their own.
My experience at Imagine! has shown me that there is in fact a substantial percentage of families we serve who are quite capable of navigating the DD system on their own, and let’s not forget that families are usually in the best position to make services decisions for their loved one. Our Autism Spectrum Disorder Program has followed this self directed model for several years and achieved impressive success. I wrote about it in this very blog awhile back.
What would happen if we developed a service model that did not force every family and individual who needed services to go through a Case Manager to get those services? A model where case management services would be available based on the needs and goals of families and their loved ones? Isn’t a Targeted Case Management EZ Form conceivable?
I think that it could save the system a considerable amount of money, money that could be directed toward better training and retention of Case Managers for those who really need case management services, as well as directed toward making information about navigating the system more accessible and easy to understand (I’m still looking at you, State of Vermont Department of Taxeswebsite).
I am aware that this would be a radical change in the way we currently fund and deliver services, and that the idea I just presented may not be a popular one. But considering the current state of the DD system in Colorado and the nation, I think it will take some radical thinking to figure a way out of the mess we find ourselves in. I’m willing to take some lumps for presenting this idea, and I hope that it will spark some discussion on what solutions, if any, are out there.
On Friday, April 23, members of the Public Speaking Class offered by C.O.R.E./Labor Source will be doing a small bit of reading at the Brewing Market Coffee Shop in Longmont. The Public Speaking Class takes a step by step approach in order to allow students the maximum opportunity to benefit. The first few classes involve discussing and presenting examples of various public speaking formats (monologues, one-act plays, poems, short stories, essays, confessionals, etc.). Then, students work on individual projects writing their own "pieces" to read.
Once the written pieces are completed, students practice speaking them aloud. Other students offer constructive critiques on enunciation, articulation, volume control, eye contact, pacing, and other elements of public speaking. Everybody is gentle with their criticisms, because they all know they will have a turn to be critiqued as well.
The next step of the class is to practice speaking in front of others. The current group of students has already had a "rehearsal" where they presented to another class at C.O.R.E./Labor Source, and now, they are ready to go public and demonstrate what they have learned.
The key component of Imagine!’s mission is to provide opportunities to the individuals we serve so they may engage fully in their communities. This class embodies that mission, and I offer my hearty congratulations to all involved.
