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October 2006 Newsletter

Table of Contents

Gubernatorial Candidates Take On Healthcare

Bob Beauprez | Bill Ritter

Bob Beauprez

Medicaid needs to be more efficient and cost-effective to better serve its consumers.  With health care spending increasingly growing in our state budget, we need to ensure that the money is being spent wisely and is helping those that need it most. 

I support consumer directed care in Medicaid.  My strategy will emphasize the idea that consumers, not government bureaucrats, should be in charge of their health care decisions.  I believe by empowering Medicaid consumers the costs of health care will not only decrease, but health outcomes and quality of life for those receiving services will improve.  Consumers, not bureaucrats, know best, what they need.  I believe the Consumer Directed Attendant Support (CDAS) program serves as a good model for transforming the rest of Medicaid. 

CDAS gives consumers direct control over their own home care resources.  I believe this is important, especially to those with disabilities, because it gives people more authority to take control of their own lives.  Persons enrolled under CDAS are able to direct, select, and train their own attendant care.  This promotes self-sufficiency and self-reliance and a gives people a personal sense of responsibility for their health care needs.  I believe this program helps increase the quality of attendant services and has decreased the cost to the state. 

I believe we must have a program for those individuals who are on Medicaid and want to work.  Often times, persons with disabilities want to work, but are unable to because of Medicaid restrictions that require a Medicaid recipients to earn less than two thousand dollars a month or have less than two thousand dollars in assets in order to receive medical and attendant care benefits.  This discourages people who want to be more self-sufficient from working because if they earn too much, they are cut off from receiving benefits.  I believe we must create a Medicaid program that will give persons with disabilities a chance to work and contribute to society, without reducing or eliminating the attendant care that they need.  I also support funding for employment through the Department of Vocational Rehabilitation.

At this time, I do not believe a Preferred Drug List (PDL) should be established under the Medicaid program.  While I support the goal of providing access to discount prescription drugs for Colorado's citizens, I am concerned that the number and variety of drugs available through a PDL would be limited and could be harmful to those that need it most but could not get the drug because it is not on the list.  Disabled people use almost 45 percent of Medicaid prescription drug benefits and have complex needs.  Delays in getting a waiver for a needed drug because of bureaucratic roadblocks could cause irreparable harm.  While a PDL will be cost effective for those with every day medical needs, it will not benefit those who have disabilities. 

A PDL has the potential to be an effective cost containment tool.  However, it also has the potential to create harmful delays in obtaining medication not on the list.  Unless I can be assured that problems with a PDL can be worked out, I simply cannot subject the most vulnerable citizens of Colorado to an experiment that can have an adverse effect on their health and well-being.  
I believe we must ensure that services for persons with developmental disabilities are appropriately funded so that they will have a chance to lead healthy and fulfilling lives. It is important that there is funding so that people can get off the wait lists in a reasonable time. This funding should come from Federal sources, as well as, state funding. I also believe public/private partnerships with nonprofit agencies must be encouraged to maximize all available resources.

Finally, as governor, I will take the advice of persons with disabilities into consideration should legislation concerning health care come up before the Colorado Legislature.  I believe those affected most by health care changes should have a voice and I welcome the advice. 

Bill Ritter

Colorado’s health care system is broken. Fixing it will be one of my highest priorities as Governor. I will address both the long-term (fundamental reform of the system) and short-term (immediate obstacles to Colorado’s good health). Health care is not the only issue of concern to the disability community. Others include demanding full Americans with Disabilities Act compliance by the state, a position with which I am in full agreement.

Some 770,000 Coloradans lack health insurance. The cost of care is rising. The number of people without insurance is increasing, employees cannot be sure that health insurance will be available in the future, and businesses are unable to offer affordable health care. The crisis is real and deep. We cannot rely on Washington or on any one person, business or advocacy organization. Coloradans must address the crisis together for all of our residents – young, old, healthy and those with special health care needs.

System Reform. The health care crisis will not be fixed by tinkering around the edges. We need fundamental reform. I know that different individuals and groups have differing needs. All interested parties – including those whose well-being depends on the current publicly funded health care system – must be heard in formulating what I am calling The Colorado Health Plan. I also know that because the crisis is systemic, any attempt to fix it that is glib or hasty would be both irresponsible and ineffective. I have committed to a year-long process to develop a Colorado Plan. The following will be among its essential parameters:

Immediate Priorities. While I am leading this systemic reform process, I will also focus on making a number of immediate changes, including the following:

Fixing our broken health care system is a wise investment, not for the next election, but for the future of our state and for all Coloradans – young, old, healthy and those with special health care needs.

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CCDC History

The Colorado Cross-Disability Coalition was founded in 1990 by individuals with disabilities who wanted to make sure that the newly passed Americans with Disabilities Act (ADA) became reality in Colorado. Initially a project of the Community Resource Center, the Coalition became independent in 1992. Founders also envisioned true cross disability collaboration and an organization that would support the full diversity within the disability community.

One of the first projects was the development of “Access and Training Consultants” which trained individuals with disabilities to do professional surveys to assess compliance with the ADA, as well as to training to companies, non-profits and government entities interested in voluntary compliance.

The second large project was conducting a series of health care hearings throughout the state. This took place in 1993-1994. This was commissioned by the Colorado Development Disabilities Planning Council. Doing these hearings made the Coalition aware that health care policy was one of the most significant concerns of people with disabilities around the state. We learned the need to have local groups throughout the state and began our statewide organizing program in 1995.

In trying to implement the recommendations that came from the health care hearings, the Coalition members attempted to become active within the state legislature. They once again faced serious barriers within their own state capitol. After other methods failed, the Coalition sued the General Assembly for access and won. They gained both physical and programmatic access and the State Capitol has remained completely accessible.

The Coalition has continued to take a leadership role on all matters concerning health care for people with disabilities and has made numerous improvement in health and human services delivery in Colorado.

In 1996 the Coalition re-assessed the Access and Training Consultants—business had slowed significantly and it appeared that those that wanted to comply with the ADA had done so. With the assistance of two dedicated private sector attorneys we began to develop our Legal Program. In 1997 we recruited Kevin Williams, a recent graduate of the DU school of law, and today the Coalition has a full fledged legal program that has been a national model in terms of ethical and successful disability rights law enforcement.

In 1998 at a Board retreat during a seemingly endless discussion of recruiting new leadership the idea for our teen program was born. The Board realized that to truly develop a new generation of leaders we needed to begin with our young people. In 1999 we had a “practice” year with two interns and then began a full fledged intern program that has run every summer since.

In 2002 we began a tradition of holding statewide meetings—this enabled us to get firsthand evaluation and needs assessments from representatives of our membership. In 2003 our members told us that we needed cross-disability, cross-systems and completely independent individual advocacy. Based on this, we began a formal individual advocacy program. In 2004 we trained approximately 70 volunteer advocates who are able to direct people to the right programs, as well as to advocate when rights involved with services are denied or abused.

Also in 2004 in response to years of heartbreaking complaints from parents with disabilities denied custody of their children due to disability discrimination our Law Enforcement Clerk, anticipating a 2005 graduation from law school applied for and received a fellowship that will enable her to work through CCDC to develop a Legal Center that will begin to provide representation of some of these parents, as well as to provide education to the court and social services systems.

The theme of our 15 years has been that when we listen to people with disabilities we not only hear about the real problems, but we are able to generate real and sustainable solutions.

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Pending Legislation will Increase Job Opportunities for People with Disabilities

Nationally known for her work in creating employment opportunities with a person-first approach that ALSO meets the demands of private industry, Janet Fiore (Pennsylvania) has been working closely with Senator Ben Nelson of Nebraska and others to introduce a government incentive for business that will entice businesses across the country to actively recruit and hire people with disabilities.

In October 2004, Congress enacted the American Jobs Creation Act of 2004 (P.L. 108-357), providing for outsourcing of collection of unpaid and past due Federal income taxes by the Internal Revenue Service (IRS). Upon full implementation of the program, it is estimated that these contracts could create up to 4,000 well paying, private-sector jobs, with percentage requirements that some must go to disabled veterans or persons with severe disabilities.

According to Fiore, “Obstacles in getting this cutting-edge legislation to pass through both arms of the federal government have arisen, but the effort continues and we anticipate success.”

National issues such as this, concerning people with disabilities and their employment, demand national backing to assure passage. To become involved and have your voice heard, contact Janet at info@workplacefoundation.org.
Additionally, watch for another one of Fiore’s projects: The Colorado chapter of the National Breakfast Club©. Support is currently being sought from local disability groups and businesses to launch a Denver chapter. The National Breakfast Club, a program of the Workplace Technology Foundation, unites local providers of job placement services and job seekers with disabilities.

To get involved with the National Breakfast Club program, contact Janet Fiore at 800-973-7687, or visit www.workplacefoundation.org.

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HIV/AIDS

Alcohol and other drugs don’t cause HIV infection but they affect your judgment and often lead to unsafe behaviors and unnecessary risks.

HIV & AIDS are genuine risks.

HIV/AIDS & People with disabilities.

There is NO evidence that people with disabilities contract HIV/AIDS less frequently than other populations

The risks:

How people get HIV:

Reducing risk:

Protect yourself:

Alcohol, drugs, HIV & people with disabilities: Did you know?

Alcohol and substance abuse: the special risks for people with disabilities"

People with disabilities, especially young people are more at risk for substance abuse than their able-bodied friends and often abuse alcohol and drugs far more than the general population.

Stress of Dealing with Disability

Besides all the same stresses and risks as their friends, people with disabilities must often also deal with chronic medical problems, prescription drugs, social isolation and lower self-esteem.

Prescribed Medications

Many people with disabilities take prescription drugs and are at risk of abusing those medications. In addition, there is the danger of mixing those medications with alcohol and other drugs. Combining even a small quantity of alcohol or non-prescribed drugs with anti- seizure medication or other prescription medications is asking for trouble.

Enabling Attitudes

Friends and family are often lenient about use or even encourage it as a way to “make up” for the disability, saying, "Give her a break. If I had a disability, I would drink too."

Constrained Socialization Opportunities

People often use alcohol to relax in social situations and people with disabilities may have particular difficulty finding drug-free social alternatives.

Physical & Attitudinal Inaccessibility Few treatment programs understand how to make their services fully accessible or have experience with people with disabilities. Very few professional programs specialize in prevention or treatment for people with disabilities.

Family of Origin

Research suggests that people with disabilities have a higher rate of parental alcoholism than others. Parental alcoholism is one of the strongest predictors of substance abuse.

Disabilities + Drugs or Alcohol Abuse = Increased Risk of HIV Infection.

Did you know?

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Independent Living Center Awarded Grant for Substance Abuse and HIV/AIDS Awareness and Prevention

The Disability Center for Independent Living was recently awarded a grant by the Substance Abuse & Mental Health Services Administration for an Alcohol, Substance Abuse and HIV/AIDS Awareness and Prevention program specifically targeting people with disabilities. DCIL has partnered with the Colorado AIDS Project to distribute information, hold workshops and co-sponsor HIV/AIDS testing events.

“People with disabilities abuse alcohol and other drugs at a rate often twice that of their able-bodied peers,” says Richard Holicky, the project’s coordinator.

The reasons for such high rates of abuse include increased stress factors, negative attitudes of others regarding disability, myths regarding disability, enabling attitudes of friends and family, constrained social opportunities, chronic under- or unemployment, excessive amount of free time, lowered expectations and low self esteem.

The Disability Center is offering informational and educational materials, consumer presentations and professional in-services focusing on the risk factors of drugs and alcohol to people with disabilities, the dangers of combining drugs or alcohol for different disabilities, the adverse effects of combining drugs and alcohol or mixing them with prescription medications, and how drug and alcohol use and abuse place people with disabilities at high risk of HIV/AIDS.

Most dismiss the risk of HIV/AIDS to people with disabilities, assuming this group rarely if ever engages in sex; as a result, HIV/AIDS is rarely discussed and often ignored. However, disability does not preclude sexual desire or the ability to act on those desires.

“In addition,” added DCIL’s executive director Carol Reynolds, “many people with physical disabilities often depend on others for basic daily activities and that dependency places them—especially women—at risk of sexual abuse and HIV.”
Recent studies from the University of Alabama at Birmingham have indicated that those with lower income, as well as those with alcohol or substance abuse problems—a category into which many people with disabilities fall—are being infected in higher numbers in recent years.

The Disability Center’s efforts to combat these factors will include outreach to rehabilitation centers, mental health centers, independent living centers and support groups.

For more information please contact Richard Holicky (303-696-2075) yochardo@comcast.net or the Disability Center for Independent Living 303-320-1345.

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Legislative Session Wrap-Up

The disability community introduced two major bills this session. One was HB 1211—originally it was a strong bill to address provider abuse and retaliation. It included actual financial sanctions for Medicaid providers that abused us or retaliated against us. However the provider lobby fought it so hard that it was watered down and became only a definition of retaliation and stated prohibition. However we still think that having this in law will be helpful because it has never been defined before, causing providers to deny that it happened at all. Thanks to our sponsors Representative Frangas and Senator Keller.

The other bill was SB 128-this bill requires the state Medicaid agency to accept a proposal from the disability community that will re-design how primary care is provided. There has been a small group of us working on this for a couple of years and we are going to do two pilot projects—one in Aurora and in Alamosa—to demonstrate that if we provide client centered care with competent primary care doctors who actually want to treat us and will communicate with us that the overall cost of care will go down and client satisfaction and outcomes will go up. If these pilots are successful we have legislative authority to expand the program. Of course this program will be run by a client controlled board so if you want to participate in this please let me know. Again, thanks to our sponsors Senator Owen and Representative Reisberg.

Fortunately this year no one ran a bill to mandate reporting for “at risk” adults so we did not have to fight that battle. The Democrats did run their annual bill to restrict drug access for Medicaid clients in the form of SB 01. They claimed that this was about getting lower drug costs for everyone but hidden in the bill was a restrictive formulary applied to Medicaid clients. Fortunately Governor Owens vetoed this bill, in part because of their deceptive manners and due to the opposition of the disability community.

There are a couple of other bills that bear mention. Representative McFayden and Senator Johnson brought a great bill that would have created a whistleblower law in Colorado. That would have allowed any citizen to contact the attorney general when they became aware of any false claim against the government. This bill would have gone a long way to reduce Medicaid fraud. Even though the primary sponsor, Representative Buffie McFayden is a Democrat, Senate Democrats killed the bill in the last hours of the session.

HB 1079 by Representative Frangas and Senator Johnson was also a good bill. This bill allows Medicaid clients who are charged by providers a formal way to contact the Medicaid agency to make those providers pay back the client.

We were unable to get a bill for an office of the disability advocate this year. We had sponsors from both parties but the Governor was unwilling to commit a new administration to such a major project. Therefore we need to work with all gubernatorial candidates this year to get them to commit to this office next year. This office must have the power to make state and county agencies do their jobs.

The success of the session was due to the amazing efforts of the disability community in having people on the hill every day. Special thanks go to Mark Simon, Sheila Hicks, Susan Newcomb, Lowell Frederick, George Roberts, Jeanette Klimach, and Mike McCarty—the crack volunteer lobbying team. Thanks to all of you that responded to our alerts and made the calls. Those calls did make a difference!!!

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Training Opportunities

As requested at the statewide meeting we are putting together a new training on guardianship issues. If you want a training in your area please contact either Dick Lodmell 970-261-3228 or Julie at the office. We continue to offer advocacy training sessions for any group of at least five people who want to provide volunteer advocacy services. WE have a list of 20 other topics that are available.

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“Universal Health Care” What is it and why should we care?”

During the upcoming election cycle you will hear a lot about health care. I thought it would be good to define some terms and give some food for thought as to how the various proposals might affect our community.

Universal health care simply means that everyone in whatever universe one speaks of (a state, a country, etc) will have access to health care. This does not necessarily mean free health care or adequate health care, but some health care. Certainly, it is a good goal to say that everyone should have some access to health care. Getting there, and determining who gets what type of care with whose money is the hard part. Some people talk about a single payer system. Again, all this means is that there is only one payer of health care—usually the government. How the government gets the money to pay for health care is another detail to be worked out. Do we raise taxes across the board? Or do we require that every employer either provide insurance or pay the state? Another idea is what they are doing in Massachusetts which is a mandate to carry personal health insurance, the same way it is required to carry auto insurance. Certainly there is a lot of waste in the current health care system and if we cut out the overhead of the insurance companies much would be saved. But would that be enough to give every American (or even every Coloradoan) all of the health care they need?

When talking about health care it is also important to distinguish coverage from care. There are efforts throughout the country to get all children “covered”. This means that all children would be enrolled in some type of insurance program, perhaps private insurance from the employer of their parent or perhaps government like Medicaid or Children’s Health Plan. In Colorado we are airing television commercials, paid for by the state, to encourage parents to sign up their children for government programs like Medicaid and CHP. As a public policy question this makes sense—if we provide all children with basic health care they will not develop preventable diseases or conditions, they will get their immunizations, and that is better for society as a whole. The same concept applies to prenatal care. If someone gets care for the baby in the womb, the baby has a better chance of being born healthy. All of these public policy questions however, focus on those who are already healthy and how to keep them that way. What about those of us who are not “healthy”. Health has many definitions but for the sake of discussing health care we should look at health care needs as services currently provided by the health care system. For our community this includes medical care such as access to doctors, hospitals, prescription drugs, specialty care, lab and x-ray, etc. It also includes personal attendant care, everything from “unskilled” care like housekeeping to private duty nursing for people on ventilators. It includes durable medical equipment like wheelchairs and includes non-medical items like transportation and home modifications. It also includes some things we don’t like such as nursing home care. For people with developmental disabilities even employment services are sometimes bundled within the health care model. For most people with severe disabilities access to health care is the defining issue in our lives. We are uninsurable in the private market and therefore must rely on government programs like Medicaid and Medicare. Even those few who start out having resources or money find those resources dwindle fast making one eligible for Medicaid eventually. In Colorado, unlike some other states, one must reach a high level of severity before being eligible for Medicaid if one is over the income level for SSI. This means that anyone who ever worked and has SSDI instead of SSI can only access publicly funded health care if they are so disabled that they require the level of care offered in a nursing facility. Everyone on SSI gets Medicaid and that is true nationally. Medicaid is the only program that really meets the needs of those with severe disabilities. Health plans, including Medicare offer a defined list of services regardless of medical necessity. For example an insurance plan might have a $2,000 limit in a policy for all medical equipment. If you use a power wheelchair that won’t even cover a year of repairs, let alone a purchase. Medicaid, however must define services by medical necessity. Some call Medicaid a “Cadillac” plan, something I find offensive. Medicaid does offer a more generous benefit package, it is the only way to get long term care without getting special long-term care insurance (which is not available to anyone with an existing disability). However those who rely on Medicaid due to disability need this expanded benefit. If the private insurance market worked for the disabled, there would not be a need for Medicaid. The government could simply give low-income people vouchers to purchase private plans.

On the national level some who talk about universal health care say “we should just have Medicare for everyone, it works so well.” I don’t know what they have been smoking or who they have been talking to but that is NOT the experience of people with severe disabilities. Because Medicare is a national program all changes must go through Congress. This means that many Medicare policies are decades old and no longer work for the disabled. For example Medicare requires that in order to get home care or medical equipment one be homebound. In 1960 that made more sense because we did not have the technology and few people with severe disabilities existed outside of institutions. Today, that policy has the punitive effect of imprisoning someone in his or her home simply because he or she has a disability and requires services. Interestingly, the federal government has told Medicaid agencies that it is a violation of the Americans with Disabilities Act to have homebound requirements for Medicaid services. Unfortunately the ADA does not apply to the federal government, only section 504 with less stringent standards. There is great debate about whether countries like Canada or England are better or worse then the United States. We subscribe to a news service called “Inclusion Daily Express” that tracks all sorts of disability related news throughout the world. We regularly see stories here about cases in England, Australia, Canada and other countries with “national health care” that deal with disabled people not being allowed to live. In England there are stories about families and patients going to court to petition the government to allow them or their loved ones to live. One story was about a 17 month old child who has spinal muscular atrophy—a disease shared by many CCDC members. Doctors say she would have no quality of life. Is that simple disability phobia, that we also see in the United States or is it more sinister. When the doctors work for the government do they then become “company docs” with an eye always on the cost of care? In both England and Canada parents who deliberately killed their disabled children have been acquitted of those murders and were seen by the communities as mercy killings. Of course, there is nothing that says that if the United States wanted to have government run health care that it would have to follow the models of any other country. We have the most advanced health care system in the world and there is no reason to lose it—but we are not aware of any other country that has been able to provide national health care in a way that does not exclude or hurt those with high health care costs—namely the disabled.

It is unlikely that we will see national health care in the near future so most of the health care reform is happening at the state level. It is instructive to look at what other states have done so that we can be involved with preventing Colorado from making those same mistakes.

The number one mistake seems to be lumping every population in need together. In our current Medicaid system we have distinct populations with distinct needs. We have the low-income families, mothers and children who are just as healthy as anyone else but who cannot afford insurance. Many of these people work at jobs that simply cannot or will not offer insurance. However the services that they use do not differ from the services used by mothers and children with private insurance. In fact, the Children’s Health Care program is basically a subsidy for private insurance for low income people. This is for those just above the poverty level who are not eligible for Medicaid. Studies show that children served in this program do better than kids served in Medicaid because with the private insurance they get automatic access to care and insurance companies have to report certain health measures such as how many children they immunize. (INSERT FOOTNOTE). People with disabilities and elderly people, however, need a very different kind of health care. We need access to services mentioned above that are not included in private health plans. Limits to services like therapy, formularies for which medications we can use, and other utilization controls typical of the private market simply will not work for us. We are also more involved in our health care because it is such an important part of our lives, not a twice a year occurrence. Therefore programs like consumer direction that require more work but allow more control work best in our populations.

Tennessee was one of the states to experiment with quasi-universal care. Several years ago they applied to the federal government to start a program called Tenncare. This was a new model where they were going to lump all government care together including Medicaid, CHP and health care for state employees. Everyone was to join a managed care plan and because the state could promise the plans volume, they thought that they could enroll more people. The idea was that they would allow most of the low income uninsured people to enroll in Tenncare. When they first started there were serious problems with the program, including horrendous due process violations and life-threatening limits on care. The good folks at the Southern Poverty Law Center sued the state and got some of those problems addressed. However the results of the necessary lawsuit meant that Tennessee was not going to be able to provide the care as cheaply as they thought. A few years passed and then the economy went south. Now the legislature and Governor realized that Tenncare was no longer sustainable and cuts had to be made. Guess who was going to get hurt? Not those who are healthier and wealthier (albeit still low income and without other insurance) but the most severely disabled. One of the services taken away was at home ventilator care for people with disabilities. The governor decided it was cheaper to just throw them all in nursing facilities. Only after ADAPT spent more than a month in the Governor’s office did he back down just a bit. But many others with and without disabilities lost health care that they had come to depend on.

Oregon is another state that has experimented with Universal care. Oregon got a waiver from the federal government and made a list of health care procedures and conditions that they would pay for. Again, by limiting the services they felt that they could increase the number of people receiving services. One child was denied a heart lung transplant because it was not on the list. Having a list that in this case was made by committee and through public hearings is very dangerous for those with disabilities, particularly rare conditions. If you have a condition that only a handful of people in the country or world share your treatment will never get on any list. As most people know, Oregon also passed the countries first assisted suicide law and then passed a law to allow Medicaid funds to be used in physician assisted suicide. What most people do not know is that at the same time that they allowed Medicaid to help kill people, they determined that specific pain medication used by people with long-term neurological conditions would no longer be covered by Medicaid. So they would give you the drugs to let you die, but not the drugs to let you live without excruciating pain. Colorado has tried several times to establish committees to explore the Oregon route. One legislative proposal several years ago would have begun that process. This bill would have rationed health care and reduced Medicaid services until the state was covering everyone under 200% of poverty.

“The Uninsured” --Who are they? In Colorado there are about 700,000 people who at some time during the year will be uninsured. Should the state provide health care for all of them? If someone without insurance has a catastrophic event—a heart attack, stroke, serious head trauma, etc., they will get care because no hospital is allowed to turn someone away in a medical crisis. However if they go to the hospital and no one pays the bill those costs come ballooning out elsewhere. If the condition is severe enough the person must use what resources they have to pay for their care and then they will qualify for Medicaid. However this does not address those many non-severe disabilities that occur such as people who need knee surgery, have diabetes without disabling affects, or have a mild mental illness such as intermittent non-severe depression. Some people can simply pay for services out of pocket. For those with an income they are often best off investing in a health savings account instead of insurance. That way they can buy the services they need and get tax-credit for those funds. Many people chose to forgo insurance because everyone knows that insurance only pays for first dollar coverage. If you get really sick, insurance will dump you on the public system anyway. It used to be that insurance would pay all costs if you were very ill, needed to be in the hospital, got cancer, or a serious accident but you paid for the annual physical, check ups for the kids, and the occasional stitches, bronchitis, and other normal ailments. Now, however insurance willingly pays for these typical things but often refuses coverage for the serious problems. With premiums often over $500 a month many people say “why bother.” Then there are those with pre-existing conditions, anyone who has ever used health care. This could be an old back or knee injury, something in your medical records stating that you were once prescribed Prozac to get through a hard time in your life, or some ongoing condition like diabetes or asthma. If you have anything like this not only will your premiums go up, but if you were without coverage they can exclude any services related to that condition for up to a year. Then you are not only paying the premium but are also paying for the care you need for whatever condition you have. There is a lot of debate as to who the uninsured are and what they need. Certainly some but not all are poor. Certainly some but not all have health conditions that need treatment. A few have serious conditions like cancer and if they do not get timely treatment they will die. If someone gets poor enough and sick enough they will get Medicaid. If they are in a true medical emergency they will get care through the emergency room. But everyone can agree far too many people are in the middle.

Colorado has dramatically expanded access to publicly funded programs in recent years. We have raised the income level for CHP to 200% of poverty. We have removed the asset test for low income families who want to get Medicaid (but it is still in place for the disabled). We have added very low income adults to the Medicaid roles (60% of poverty). The only expansion in all of this for people with disabilities was to add a few hundred slots to the children’s HCBS waivers—that was very important but the possibility of a waiting list for severely ill and even dying children is still there. No expansions focused on people with the greatest health care needs. CCDC even proposed a modest change in one program, Home Care Allowance. This program provides the same services that are available through HCBS personal care. We suggested moving the current clients to HCBS using the CDAS program so they could still hire the help they wanted and allowing people who were not disabled enough for HCBS but who could not manage their housework and errands to obtain home care allowance, only until they became HCBS eligible or no longer needed the services. However no one was interested in this reform to help those people often in desperate situations. This was true despite evidence that many of these individuals become more disabled from falls and preventable injuries due to not having a small bit of help in the home.

So—what is the answer? No one has the answer at this point. But in representing the disability community and our interests here are some questions that should be asked about any health care reform proposal.

  1. Will those creating the proposal and implanting the proposal and otherwise making decisions include people that can adequately represent the disability community, particularly those reliant on the publicly funded health care system.
  2. At what point should it be government’s responsibility to pay for care for individuals and families? (This can range from the harsh never—to the impossible always but is probably in between). Should it be based on medical need? On poverty? On a combination of the two?
  3. How much of one’s own money should someone have to spend on health care? The Deficit Reduction Act of 2006 allows states to impose higher co-payments on some Medicaid services. At this time, Colorado has not opted to ask for this flexibility. However, Colorado did raise co-payments for the Indigent Care Program. If a client fails to pay a co-payment should they be denied further care until they pay up? Should there be an annual cap on what anyone has to pay out of pocket? If so how much and for whom?
  4. Personal responsibility: People love to throw this word around but it is important. What if someone causes their own illness and how far do we take this? Do we deny smokers treatment for cancer? Do we deny sportsmen care for head and spinal chord injuries? Should we impose higher co-payments on people with “unhealthy” habits who refuse to diet and exercise when they are capable of doing so? What about pregnancy? Should we cap the number of babies the state will pay for and if we do what happens if people get pregnant anyway? It is certainly not the choice of the baby.
  5. If any expansions prove unsustainable what will be cut?

Here is what we should ask of candidates:

These are very difficult issues and there is no easy answer. People with disabilities are the proverbial canaries in the mine when it comes to health care. In the mining days they used to send canaries into the mines to see if the conditions were safe. If the canaries lived then it was safe, if they died then it was not safe. Health care that works for us will work for everyone---but we will be the first ones to be killed by botched reform efforts.

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HHS Provides Funding to States for Alternatives for Nursing Home Care

“Money Follows the Person” Helps States Rebalance Long-Term Care Systems
States will get additional help from the federal government to support elderly and disabled Medicaid recipients who wish to live in the community rather than institutions, HHS Secretary Mike Leavitt announced today.

Through competitive grants, the Centers for Medicare & Medicaid Services (CMS) will give states a total of $1.75 billion over five years to help shift Medicaid from its historical emphasis on institutional long-term care services to a system that offers more choices for seniors and persons with disabilities from all age groups, including home and community-based services.  This Money Follows the Person “rebalancing” initiative was included in the Deficit Reduction Act of 2005 (DRA) currently being implemented by CMS. This endeavor is also a part of President Bush's New Freedom Initiative.

“With this program, people who need long-term care and prefer to live in their own homes and communities can do so,” Secretary Leavitt said.  “States will also get more for their money by giving the elderly and people with disabilities more control over how and where they get the Medicaid-funded long-term care services they need.”

“We’ve worked with advocates and states for years to end the institutional bias in Medicaid, and now we’ve got the best opportunity ever to do it,” said Mark B. McClellan, M.D., PH.D., CMS Administrator.  “We need to move as quickly as possible to make that shift across Medicaid.  With new Federal funding, there is no longer any excuse for the status quo.”

States interested in applying for a “Money Follows the Person” grant can propose new programs to CMS that are aimed at sustaining people in their homes or communities who would have otherwise received care in a nursing home or other institution. The qualified expenditures may be eligible for an enhanced match rate from the federal government equal to an increase of 50 percent of the usual state Medicaid percentage contribution in addition to the usual match rate. In effect, the federal government will pay for 75 to 90 percent of the costs of transitioning individuals out of nursing homes and into community settings, and the associated long-term care benefit costs. Grant funds may also be used to help control how they receive these services.

The higher matching rate will be applied to certain services provided to an individual for a one year period after the individual moves out of an institution and into the community.  Funds can be used not only for alternatives to institutional care services, such as home health care; they can also be used for home modification costs, respite services to augment informal or unpaid caregivers, personal care and assistive devices.  In their applications, states are encouraged to coordinate with local and state housing authorities to provide coordinated assistance for community-based housing needs.  CMS and the Department of Housing and Urban Development (HUD) have made steps to establish a new inter-agency liaison to support this coordination.

“We know that accessible, affordable, integrated housing is critical to a person's ability to make the transition into the community, HUD Secretary Alphonso Jackson said.  “My agency will strongly urge the Public Housing Agencies and Housing Finance Agencies in the states to work collaboratively with Medicaid programs to help create opportunities for those moving out of institutions into the community.”

Each state awarded a grant must continue to provide community services after the year of enhanced match as long as the person needs community services and is Medicaid eligible.  The deadline for the first year’s applications is Nov. 1, 2006. Demonstration grants will be competitively awarded to states from Jan. 1, 2007 through Sept. 30, 2011.   Funds will be available for a five-year period; however, states must participate in the demonstration for a minimum of two consecutive years.  

The Medicaid program traditionally pays for care for persons who are elderly and those with disabilities living in institutions who needed help with activities of daily living, because institutional care was the norm when the Medicaid law was enacted forty years ago. To provide home and community-based services, states must get a “waiver” of normal program rules designed to pay for care in institutions.  Waivers and demonstration programs offer the promise of significantly lower costs per beneficiary and reductions in overall Medicaid spending as a result of giving individuals control over how to get their services, rather than requiring them to use institutional care in order to get Medicaid long-term care benefits. But rebalancing Medicaid coverage may have some short-term costs, which the new federal program enables states to overcome.

In addition to the Money Follows the Person initiative, the DRA made many changes in Medicaid that will allow states to add home and community-based services to their permanent array of benefits without having to go through the waiver process.  For example, under another DRA provision, states now have the option to provide home and community-based services without needing a waiver.

“Even though personal control leads to better results and lower costs for people with a disability, it’s still true today that most elderly or disabled enrollees do not have a choice about how they get their long-term care services under Medicaid,” said Dr. McClellan. “By working with states, advocates, and Medicaid enrollees to take advantage of these unprecedented opportunities, that’s going to change."

A copy of the “2006 Money Follows the Person Rebalancing Initiative Demonstration Program,” including the application forms, can be obtained at www.grants.gov.  For more details about the New Freedom Initiative, visit the CMS Web site at: http://www.cms.hhs.gov/newfreedom/

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PEAK Parent Center Helping Families Helping Children

PEAK Parent Center is Colorado’s federally designated Parent Training and Information Center (PTI), disseminating information statewide. PEAK provides information and skills to families of children with disabilities so that they can obtain increased and improved services for their children and better utilize the special education process. PEAK helps families see new possibilities for their children’s futures by identifying and building on individual strengths, hopes, and dreams.

PEAK offers trainings and workshops on Understanding IEPs, IFSPs, and IDEA 2004, Accommodations and Modifications, Behavioral Support Strategies, Transition (Grade to Grade and School to School), and various other topics.

Each year PEAK Parent Center co-sponsors a national conference on Inclusive Education, bringing Colorado cutting-edge resources and presentations on successfully supporting individuals with disabilities in general education classrooms incorporating the values, perspectives, and experiences of individuals with disabilities themselves. (The 2007 conference will take place on February 15-17 in Denver; look for brochures in October of 2006.)

As another outreach to families, school personnel, and individuals, PEAK publishes and distributes books, videos, and resources that forward their core mission and values. Through collaboration with the Colorado Department of Education, PEAK also manages a statewide calendar of disability-related events for families. Individuals can log on and search by word, subject, geographical location, disability category, date, age group, and more!

Visit www.PEAKparent.org to view PEAK’s statewide calendar, online bookstore, and to find out about volunteer opportunities available throughout the year.

Although PEAK’s central office is located in Colorado Springs, their outreach expands throughout the state through services like the Denver Community Parent Resource Center (CPRC), trained parent advisors, and regional parent mentors.

The Denver CPRC is located in the heart of downtown Denver and serves families from diverse cultures who have traditionally been underserved, have low incomes, have limited English proficiency, or have disabilities themselves. Additionally, the Denver CPRC has developed a cadre of trained parent volunteers who can extend advocacy and attend IEP meetings.

Contact PEAK Parent Center or the Denver Community Parent Resource Center today and find out how PEAK can help families to ensure bright futures for all individuals with disabilities.

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Kmart: Largest Wheelchair Access Class-Action in History

Thanks to our friends Fox & Robertson

In 1999, when Carrie Lucas, myself, Tim Fox & Amy Robertson first met to discuss access problems Carrie had at Kmart stores, we never dreamed that seven years (that’s SEVEN YEARS!) later, we would resolve the largest and most comprehensive wheelchair access class action settlement in United States history. Carrie’s tenacious letter writing and Fox & Robertson, P.C.’s unbending commitment to CCDC and the civil rights of people with disabilities brought all of us the greatest settlement of its kind to date.

What started out, like many of our cases, as a letter from a CCDC member to her local Kmart store asking them to correct many of the usual problems -- inaccessible parking, closed check-out aisles, blocked access to merchandise, clothing racks too close together -- now stands as what Judge Kane of the United States District Court of Colorado called the “model” and “paradigm” of ADA class action litigation. On July 27, 2006, Judge Kane gave final approval to the nationwide class action that will cause ALL of Kmart’s stores to come into substantial compliance with the Department of Justice’s Standards for Accessible Design (commonly known to us as ADAAG) over the next 7and 1/2 years. He also gave great praise to Fox & Robertson for their work on settling this case, something we do not see from the courts often.

The settlement and details about the case and agreement can be found on our web site at www.ccdclegal.org/kmart.htm. The stores will be surveyed by Evan Terry Associates, a nationally recognized ADA accessibility compliance firm and trained surveyors and later verified for compliance. Also, in states having statutory damages remedies -- including Colorado -- individuals who have experienced accessibility discrimination at Kmart stores can recover damages. The form for doing so is also on our site. A $13 million damages fund has been established ($8 million in cash and $5 million in gift cards).

This is the biggest class action access settlement both in monetary terms (estimates of what it will cost Kmart will spend correcting its stores vary, but it will be in the tens of millions of dollars) and in terms of the number of barriers that will be remedied and by what methods.

This is an enormous victory and a big story for CCDC.  But that is only part of the story. Our friends at Fox & Robertson, P.C., the two-lawyer law firm (although during the case Michael Breeskin was with the firm and was invaluable to this case) were lead counsel. Over seven years of hard-fought litigation, they devoted nearly 40 percent of their time to this case, and as is usually the course, did not have clients they were billing by the hour. The out-of-pocket costs alone in this case were enormous. After the case was filed and a large amount of work had been done (e.g., nationwide interviews and depositions), we discovered many other individuals had problems with access in Kmart stores, including CCDC members, Debbie Lane and Julie Reiskin. Fox & Robertson requested that the case be certified as a nationwide class action in 2000 so all of Kmart’s stores could be brought into compliance. Kmart fought back hard. Fox & Robertson brought in many talented disability rights lawyers around the country to assist in the case, including Brian East of Advocacy, Inc. in Texas and Bill Lan Lee, formerly the head of the Civil Rights Division, U.S. Department of Justice, to name only two of the over twenty lawyers involved.

Then, after so much work had been done, Kmart filed for bankruptcy. It looked as though all of our work was lost, but Fox & Robertson fought on through the bankruptcy. When Kmart emerged from bankruptcy, the case continued. The Court certified the class action in 2005, and Kmart appealed. It seemed there was no end in sight. However, at long last, Kmart hired new counsel (they hired numerous firms along the way) and settlement discussions began in earnest. The result is this historic settlement. We are very pleased with how Kmart came around to this settlement and look forward to working with them to implement it. They have already started.

CCDC members should be very proud to have been a part of such a momentous ADA victory. So...read the settlement agreement, fill out your claim forms, and, next time you see them, thank Tim Fox & Amy Robertson for taking on Goliath and making the ADA a reality for so many people.

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Disability Community Loses a Friend and Activist

Patrick Zimmerman an active member of the Colorado Disability Community died on August 18th. While his life was short, it was so meaningful, influencing not only people who knew Patrick, but influencing so many people who will never meet Patrick and influencing disability policy for the state of Colorado.

I got to know Patrick during the past several years and I had the honor of watching his sense of disability pride unfold before my eyes. He processed the intense feelings of fair and unfair—seeing that the real injustice was not in having a disability but in the systems that we must negotiate. He realized that it was not he who needed to be fixed, because he was not broken. He began to understand that not only is there nothing wrong with having with a disability, but there is real beauty, power and incredible strength in our community and took on a sense of pride, of cultural identity.

To read more about Patrick please log on to www.ccdconline.org/patrick

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Vote! You have choices in addition to those on your ballot.

This is an exciting year for voters with disabilities in Colorado and across the country. For the first time in our history, all polling places for federal elections are required to be accessible for voters with disabilities. Colorado law also requires full accessibility for every polling place used in state and coordinated elections. This includes the path of travel, parking and entrance to polling places, as well as the voting areas inside. Most important, every polling place is required to provide a voting system that allows voters with all types of disabilities to vote in private and without assistance.

Please contact The Legal Center if you find that your polling place is not accessible. We will work with you and your county election officials to solve the problem.

Call for Election Judges

Some counties are still recruiting election judges for the November election. The hours are long and the pay is relatively low, but this is important work and a way to demonstrate that people with disabilities play a vital role in civic life. If you are interested, please contact your county clerk and recorder’s office.

A Choice in Where and When to Vote

  1. What’s new this year, Colorado voters will have three choices of how to exercise the right to vote:On Election Day (November 7) you can vote at your precinct polling place or, in some counties, at any “vote center.”
  2. You can choose early voting at any of your county’s early voting sites.
  3. You can vote by absentee ballot.

What's new about this?

Many voters with disabilities have had to vote by absentee ballot because their polling place and voting system were not accessible. This is the first year that voters will truly have a choice.

Are You Registered?

Prior to Election Day, all registered voters should receive polling place information from their county election office in the mail. If you believe that you are currently registered to vote and you do not receive this information, contact your county election office to verify your registration. The last day to register to vote for the November 7 election is October 10. You can find your county’s election office at http://www.elections.colorado.gov or call The Legal Center, (303)722-0300 or 1-800-288-1376 for information.

Vote Centers

A significant change for Colorado voters is the move to vote centers or “super precincts.” Successfully pioneered in Larimer County in 2004, vote centers are located throughout the county and any registered voter in that county can vote in any vote center. So far at least 20 counties have joined Larimer County in using this model:

The Legal Center generally supports the vote center model which has, in part, been driven by the new accessibility requirements. This model should significantly reduce the need for provisional ballots related to “out-of-precinct” voting. A concern, however, is the fact that many voters will have to travel farther to get to a polling place. It is a good idea to plan your Election Day transportation in advance by deciding which vote center you will use.

Contact The Legal Center if you need assistance with your transportation plan.

The New Machines

Currently there are four accessible electronic voting systems or direct recording electronic (DRE) systems certified for use in Colorado. These DRE systems use adaptive and assistive technology to facilitate voting and casting a ballot independently and privately. While not universally accessible, (for instance, voters who have vision or other print disabilities, and are also hard of hearing or deaf, will not be able to use the audio feature for independent access) most citizens with disabilities can enjoy the same right to a private ballot as the rest of the voting population. Approximately two thirds of the counties will be using the Hart InterCivic eSlate machine. The VOTE! Program believes that this system is generally the most accessible of the state certified systems in that it provides dual ports permitting simultaneous use of headphones for private audio access, and an adaptive switch, or sip and puff device (bring your own), for independent access for voters with limited use of their hands.

Be Seen Voting!

The VOTE! Program encourages voters with visible disabilities to vote at a polling place, either on Election Day or during early voting. It is important that the rest of the community see that people with disabilities vote and are active, participating members of their communities.

The bottom line is no matter what method of voting you choose, make sure to vote!

Checklist: What you need to know for trouble-free voting

Contact The Legal Center if…

VOTE! Program
The Legal Center for People with Disabilities and Older People
455 Sherman St, Suite 130 Denver, CO 80203
(303)722-0300, 1-800-288-1376
www.thelegalcenter.org or fgross@thelegalcenter.org

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Colorado Does Care

By Clifton D. Croan MA,LPC

Colorado now has an option in the next legislative session to utilize a system which will significantly improve mental health care in Colorado.  The system is a daily symptom checklist telephoned in so the Consumer and the Provider may monitor how effectively treatment is proceeding.  This system also has the capability of providing a rating system of Provider care.  Actually, the rating component is not new in medicine, it has been used for rating surgeons in New England over ten years with very good results in improving medical treatment.  Additionally this system, called the “Enigami System”, will provide Colorado’s Department of Health Care Policy and Financing with data driven oversight to insure the new wave in treatment –evidence based medicine—is effectively utilized.

Representative Frangas advised me to meet with the Colorado Cross Disability Coalition to gain endorsement.  The Coalition has decided to endorse this Consumer empowering approach to services.  Subsequent meetings with other Consumer advocacy groups, members of the Colorado House of Representatives and Senate have seen phenomenal support for this Consumer oriented approach to care. 
Representative Debbie Stafford has kindly offered to be the primary sponsor of a bill in the House of Representatives which will make accountability in mental healthcare a fact in the Colorado Medicaid system.  If you believe that active participation in your care and accountability of service performance by providers is needed—please contact your representative, Senator, Consumer advocacy group, and the State Department involved in the “the System”.  Please help insure that “Colorado Does Care!”

Enigami Systems, Inc website may be viewed at:  www.enigamisystems.com

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Disability Movement Captured in Art

Access Gallery on 909 Sante Fe Denver, is currently working on an art project that will expose the history of the disability movement to the public.  If you have pictures, art , or stories you would like to share with the public please contact Jaime at 303-839-1775.  The display is scheduled for February of 2007.

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CCDC Thanks Donors and Sponsors for 2006

We would like to take this opportunity to thanks some of our sponsors and donors for 2006.  Rose Community Foundation, Bamboo Fund, PASCO, Fox & Robertson, Frontier Airlines, Wells Fargo, Disability Center for Independent Living, CCB Partners, Developmental Pathways, The Legal Center, Colorado Bar Association, Mobility Unlimited, Hilltop, AEC.

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CCDC Thanks Bill Sponsors

Thanks to the following legislators who sponsored bills for us this year Representatives Frangas and Cloer for supporting our anti-retaliation measures, Representative Reisberg for our primary care bill and Representative Mc Fayden for sponsoring the false claims bill (not a CCDC initiative but one that we supported wholeheartedly). Thanks to the following Senators as well-Senator Keller for our anti-retaliation bill, Senator Johnson for the false claims bill and Senator Owen for the Primary Care Bill. Also thanks to Representatives Jahn and Ramey Johnson for sponsoring consumer directed care bills in the recent past and Senator Johnson for the same.

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CCDC Surveys State Candidates

The following candidates responded to CCDC’s survey. 

Survey Responses

The candidates listed below each statement answered affirmatively to each statement. Comments are listed below the names.

_____I believe that it is essential to include people with disabilities in policy discussions and decisions about disability related policy. I will make every effort to do so and will include people from the disability community in meaningful ways if sponsoring any legislation that will affect people with disabilities. I will support the appointment of qualified people with disabilities to relevant boards, commissions and advisory committees.

Boyd, McGihon, Fawcett, J. Salazar, Barry, Kerr, Suthers, Tancredo, Winter, Fitzgerald, Hodge, Fiorno, Tochtrop. Keller, Green, Fairfield, Johnson

_____I believe that people with disabilities know what is best for them and should have maximum opportunity to direct their care and control the resources allocated for their care. I will support legislation to expand consumer-directed care in public assistance programs for people with disabilities.

Boyd, McGihon, Fawcett, J. Salazar, Barry, Kerr, Suthers, Winter, Fitzgerald, Hodge, Fiorno, Tochtrop. Keller, Green, Fairfield, Johnson

_____I support the work of volunteer/citizen lobbyists who are not paid and who do not have expense accounts. I will give them equal time and listen to them as much as I listen to paid professional lobbyists.

Boyd, McGihon, Fawcett, J. Salazar, Barry, Kerr, Suthers, Tancredo, Winter, Fitzgerald, Hodge, Fiorno, Tochtrop. Keller, Green, Fairfield, Johnson

_____I believe that people with disabilities have a right to live in their natural communities with proper supports instead of institutions. I will support any efforts to make sure that our policies promote the use of home and community based services and policies that assure that dollars follow people rather than programs.

Boyd, McGihon, Fawcett, J. Salazar, Barry, Kerr, Suthers, Tancredo, Winter, Fitzgerald, Hodge, Fiorno, Tochtrop. Keller, Green*, Fairfield, Johnson

*I’ve been a strong advocate of HCBS for 20 years- since its inception

_____I believe that people with disabilities should expect accountability from the state and local agencies that administer disability programs, such as the state Medicaid agency and the state and local human services agencies. I will work to make sure that such agencies work closely with the disability community, involve this community in meaningful ways to make program improvements, and have accessible and reasonable grievance and appeal processes.

Boyd, McGihon, Fawcett, J. Salazar, Barry, Kerr, Winter, Fitzgerald, Hodge, Fiorno, Tochtrop. Keller, Green*, Fairfield, Johnson

*most important

_____I believe that children with disabilities should have a right to a free and appropriate public education and that any choice available to the general student population should be made available to children with disabilities. I also believe that children with disabilities deserve high expectations and accountability to the same extent it is afforded to students without disabilities.

Boyd, McGihon, Fawcett, J. Salazar, Barry, Kerr, Suthers, Tancredo**, Winter, Fitzgerald*, Hodge, Fiorno, Tochtrop. Keller, Green, Fairfield, Johnson

*There may be limitations in choices but parents and children should be part of the discussion and the outcome should be based on trying to be as inclusive as possible.

**Provided they do not disrupt the ability of other students to learn

_____I believe that people with disabilities should have the same opportunities and responsibilities as people without disabilities. This includes the right to marry, have children, work, worship and recreate. I will work to make sure that Colorado assures these basic opportunities to citizens with disabilities.

Boyd, McGihon, Fawcett, J. Salazar, Barry, Kerr, Suthers, Tancredo, Winter, Fitzgerald, Hodge, Fiorno,*  Tochtrop. Keller, Green, Fairfield, Johnson
           
* Thirteen years ago I experienced a rare virus, Guillian-Barre Syndrome (GBS), which left me with Quadriplesia---.  I had to learn to talk, walk, and dance all over again going from total no movement of limbs and a smile.  I understand the care, P.T. and O.T. that it takes to get back into “the world”.  From standing, moving forward on parallers, a chair, a walker, a cane.  Lifting and holding a spoon and getting a morsel to the mouth.  Besides, the drive to get to that next place.  I believe we need to make it all possible and accessible.  I have included dancers of all abilities into my Performing Arts Company and know that everyone with a beating heart can dance.

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