Living Independently

Colorado ADAPT demands Governor Hickenlooper and CMS move to apply for the Community First Choice Option

(DENVER, January 13, 2012) Colorado ADAPT visited the Colorado Governor’s office and demanded Gov. Hickenlooper order the Department of Health Care Policy and Finance to begin now to work on getting the federal enhancement for the Community First Choice Option. ADAPT also went to the local Center for Medicare and Medicaid Services (CMS) office to demand Jeff Hinson urge the federal agency to complete the final regulations that will allow Colorado to apply for Medicaid enhanced funding.

Colorado ADAPT meets with CMS

Contacting him in route to the CMS Baltimore office, Jeff Hinson agreed to give the message to Marilyn Tavenner the CMS Administrator today and the Governor, who was out of town, will be responding to ADAPT next Tuesday at 3:30, after speaking with the department over the holiday weekend.

“I promise you that I will stop by her office today and tell her,” said Mr. Hinson on the phone with Colorado ADAPT from Maryland, “and send her a note if she is not in.”

In Denver, Colorado ADAPT continued to meet with the CMS Regional Administrator about what they could do to ensure that the Community First Choice (CFC) Option did not miss Colorado. States that apply for the “enhanced match” will get more federal Medicaid funding. The Community First Choice Option is a program that was developed to help states reduce Medicaid spending by allowing citizens to choose to live or remain in their own home or the community rather than expensive institutions and nursing homes.

“Richard, you know we have never come to the department asking for money,” said Dawn Russell of ADAPT to the Associate Regional Administrator, Richard Allen; “we haven’t come to rob your bank, ADAPT always brings money and savings to the table.”

CFC is part of the Affordable Care Act and although some states like New York have already applied for the expanded funding, most states like Colorado are waiting for a final version of the CFC regulations before putting in their applications. ADAPT is asking the governor to start now and direct HCPF to begin to develop the implantation council that is part of the CFC regulations, and to prepare to apply for the funds when the final regulations are published.

Colorado ADAPT in the Governor's Office

“We saw what happened in 2006 when our state failed to apply for the Money Follows the Person grant,” said Dawn Russell. “Not only did we miss out on millions of federal dollars, but our state lagged behind in building the infrastructure to save millions. It wasn’t until last year that the feds opened the program again and Colorado got $22 million.  We are asking the governor to be proactive and create the implementation council. Colorado cannot afford to watch HCPF fail to apply again.”

ADAPT is also demanding that Jeff Hinson contact Marilyn Tavenner the new Administrator of CMS to get the CFC regulations finalized and to meet with ADAPT. The regulations were originally scheduled to be completed last October.

ADAPT, Around Colorado, System Change CFC, Colorado ADAPT, Community First Choice Option, Medicaid

The 2011 CPWD 704 Report

The “704 Report” is the annual federal report we make to the Department of Education and to the state of Colorado about our performance. It is a very bureaucratic document, but we have made it available for our consumers and the public to see. It is a public document, named after the “Title VII” section that authorizes our federal funding.

You may examine this document at: http://www.cpwd-ilc.org/download/704/2011-704.htm

One general picture you can get of CPWD from our 704 is how many people we have worked with over the past reporting year, from October 1st to September 30th. This year our 704 shows that we have worked with 716 fewer people than we did last reporting period (Oct 2009 to Sept 2010). Our 2010 year total was 1380 and this year the total is 664. If you are just focused on big numbers you may think that we really fell short this year; however, we believe that these numbers actually show some great progress.

Total Consumers 2008 - 2011

There are three things that we have changed this year that have really impacted this report. First is we have shifted our reporting emphasis achieving goals rather than reporting time spent. Secondly, CPWD has a new commitment to real numbers and real time in reporting, and finally we have a new online database tool for our reporting.

The change to reporting goals is to better track our outcomes in Independent Living while still being able to report what we do with our time and the federal funds. The change is looking more at what people accomplish rather than how staff spends their time. In the past CPWD had used a database tool that was focused on keeping track of contacts with people and provided this long list of services that may describe what we did with individuals. The sum of all these interactions may show generally how someone was working for independence, but often it only showed a disharmonious collection of events.

Focusing on goals not only clearly illustrates what our role as an Independent Living Center will be, but it directly challenges people to work for equality and for individuals to define success. It also allows for disappointment and the essential and valuable lessons one can learn from failure.

Goal Success Rate.

Of course by emphasizing goals we can also assist and teach the necessary components of success. We have not developed this direction to claim our consumers’ accomplishments for ourselves; as a matter of fact, most goals are in progress and will teeter on collapse. Most goals will change and many will be abandoned. This year however, our 704 report shows significantly more people setting and meeting their goals (27%), and an overwhelming number of our consumers have developed an Independent Living plan with goals (81%). This is up from a 10% goal success rate in 2009, with only 17% of consumers developing an Independent Living Plan.

Still the numbers can be discouraging; going from 1380 to 664 looks like a huge step backward. Actually this change represents CPWD’s new focus on real numbers. In the past our database would keep track of anyone we worked with or called us and we “opened” a Consumer Service Record (CSR) for them. Literally thousands of people contacted us and successful or not we had no reason to “close” their record. We had no reason to keep it open either, except maybe years later they may have another issue and there was the CSR ready to go. We also had a bias about closing, it sounds so negative and final.

CPWD Records Closed 2008 - 2011

Starting back in 2009 we began to incrementally close the CSRs we had created and lost contact with the individual. Before 2008 we would typically close between a 15% and 25% of the consumer files. In 2009 we closed about 45% and last year we closed over half of the total of active consumers. What CPWD learned was rather than less, this condensing of records made us more responsive and aware of the people we work with. Rather than a long list of faceless consumers, each staff had a much more reasonable number of people they work with.

Five and ten years ago a new CPWD staff member would suddenly be looking at a list of two-hundred consumers of which they may only know a handful. That is what happened to me back in 2004. I felt my job as an Independent Living Adviser was to be the caretaker of that huge list, not to get to know all the people personally or recognize them in public. Now, there are very few consumers that a CPWD staff member has not met personally and I would guess that any individual staff member would recognize each of the people they work with if they happen to get on the same bus.

The true advantage to real numbers however is that it better describes what we do and who works with CPWD. The numbers we report now are people we know and are currently working with. The fact is we have much more demand than CPWD can supply, but that is more evident now with our commitment to real numbers and reporting outcomes. Staff spends more time, and more quality time with each individual. The staff can use the record to “tell a story” about each individual’s struggle toward independence rather than just list services and time.

And the closed file problem is gone. If we don’t work with someone in the reporting period, we don’t report it, but we don’t have to close their file for this fact to be in our reports. We also don’t have to talk with people about what this means because closing your file has an unwanted connotation while achieving your goal is certainly what we want.

Number of goals set 2008 - 2011

The final part of this new emphasis on accuracy and outcomes is that CPWD is using CIL Suite as our online reporting tool. This new database helps us to track outcomes and goals and we can report accurately what we need to report to organizations that provide us funding. The numbers reporting predisposition of our previous database led us to think of the database as just holding numbers. Now we can use our reporting tool and new emphasis on goals to show more accurately what we do as an organization.

Additionally, CPWD does not have any reason to look at our consumers as numbers. Our reporting tool helps us to understand each person and that individual’s Consumer Service Record will be more of a reflection of them and less of a collection of numbers, dates and times.

There is actually a lot more to the 704 Report. The Center’s goals and direction, what we feel our needs are and what we plan to do to change our community. Mostly I hope you see that this report shows how CPWD is working in partnership with people to obtain and maintain choices for independent living by promoting self-determination, self-respect and equal opportunity. That is our mission.

-Tim Wheat
The Community Organizer for CPWD
tim@cpwd.org
303-588-7069

Independent Living 704 Report, CPWD

Leon Rodriguez, Director of HHS OCR

(DENVER Dec. 12, 2011) Leon Rodriguez began as the Director of the federal Health and Human Services Office of Civil Rights in early September and today visited the Denver regional office as part of a nationwide “listening” tour. What he heard was that there is still a strong institutional bias in Colorado and that Olmstead implementation is still far off.

Dawn Russell an organizer of Atlantis ADAPT, the Denver chapter of the largest grassroots direct-action organization for people with disabilities, challenged the Director to show progress and meet benchmarks that would demonstrate Olmstead compliance.

Mr. Rodriguez noted that his organization was complaint-driven but that he plans to institute “self-initiated compliance reviews.” The director said that he is compiling information from around the nation on “how you do Olmstead” and he said he plans to look at that data to develop benchmarks.

“Some of the discrimination is not just individual instances of inequality,” said Dawn Russell. “When you are in the institution you get a high level of expensive custodial services regardless of your need. The day you move out; however, your service levels are minimal and based on need.”

On the most basic level the payment methods make it simple for a Medicaid eligible individual to move into an institution, while it is difficult to move into the community and receive the same Medicaid services. This discrimination is obvious when you consider that in the institution a person with a disability the payment is about three times the Medicaid reimbursement of the same individual in the community. The nursing home payment is in advance and consistent, while home-health services are provided first and reimbursed dependent on an individual’s need.

Anita Cameron and Dawn Russell confront Leon Rodriguez.

The economic incentive tends to concentrate people with low needs in the institutions where they are most profitable to the facility and drives people with high needs into the community where home health can get a skilled rate over the very low custodial care rate or homemaker services. Likewise, someone with very little medical or skilled needs may find it difficult to get a home health that will provide custodial care without the higher Medicaid rate.

“We see agencies cherry-pick Medicaid consumers,” said Anita Cameron of ADAPT. “They know the formula and won’t pick-up someone because they just are not profitable enough.”

Velveta Howell, the Denver Regional Manager of the HHS Office for Civil Rights introduced Leon Rodriguez to the crowd of about 40 who came to the listening session this morning. Ms Howell invited people to stay updated with the OCR by using their listserv at: http://www.hhs.gov/ocr

Mr. Rodriguez also stated that the HHS OCR enforces Health Information Privacy and has new authority that adds gender discrimination under Section 1557 of the Affordable Care Act. He said that his office will soon inform people nationwide of their right to view and correct their medical record.

More photos on the Boulder ADAPT Facebook page.

ADAPT, Around Colorado, System Change HHS, Leon Rodriguez, OCR

Photos from the march and rally.

Senator Aguilar of Colorado District 32

Over 100 people marched from 6th Street and Grant to the steps of the Colorado Health Care Policy and Finance building where they rallied with the direct message: “My Medicaid Matters.”

The march and rally were organized by Colorado ADAPT to send the message to Washington DC and the Deficit Reduction Super Committee that Medicaid is an essential federal program. ADAPT has proposed cost saving Medicaid reform for Congress to consider that will continue to support people with disabilities in the community and still save tax dollars. Generally the ADAPT proposal is to expand the use of community-based services as an option to expensive institutions, to de-medicalize services, to expand consumer directed options and to eliminate wasteful bureaucracy.

“This Super Committee holds our very lives in their hands,” said Anita Cameron of ADAPT and one of the organizers of the march. “Their vote could send millions of people with disabilities and seniors around the country into nursing facilities, which actually costs states more money. Our very lives and freedom are on the line.”

Before noon about 100 activists gathered at 6th and Grant to start the march. Morris Price, Rep. Diana DeGette’s District Director addressed the crowd before the march. Rep. DeGette is in Washington.

The Denver Police stopped traffic for the march, as the long line made its way mostly uphill on Logan and past the state Capitol to the HCPF office building on Grant. Along the way, the marchers chanted “My Medicaid Matters,” following someone shouting out a focus to the Medicaid program including: Independence, family, jobs and community.

Colorado ADAPT My Medicaid Matters March

At the rally, Dawn Russell of ADAPT began with a little history of the My Medicaid Matters campaign and what ADAPT had accomplished with Money Follows the Person and the Community First Choice Option.

“It was no surprise yesterday when news reports announced it is likely that the Super Committee will fail to reach a debt deal,” said Ms Russell. “Many believe their plan is to kick the can down the road, extend the deficit reduction problem to the next administration. Because of the Super Committee impotence How long will we wait for ADAPT’s proposals for REAL Medicaid reform?”

Senator Aguilar of Colorado District 32, Carol Meredith, Mark Stallman, James Tucker, Julie Reiskin and Anita Cameron all spoke at the rally to reinforce the message that “my Medicaid matters.”

ADAPT, Around Colorado, System Change March, Medicaid, Rally