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Colorado Quarterly Magazine 

"Rewriting the Myths, Redefining the Realities"

 

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It's All About Freedom

by Homer Page

The Colorado state budget for fiscal year 2003 line item dealing with Medicaid funding for nursing homes is $370 million. This amount will support approximately 10,000 persons who live in nursing homes. The community based long term services line item for 2003 is $183 million. This amount supports approximately 12,000 people who live in their own homes. That is an average of $37,000 per person living in a nursing home and $15,000 per person who lives in an integrated setting. So why place people who do not need or want to live in a nursing home in that setting, and why make Medicaid cuts in community based services, while not making them in nursing home services? These were the frustrating and painful questions that persons with disabilities were asking during the last two weeks in June.

A budget crisis has forced the Governor to require across the board cuts in the State budget. On June 14, the Medical Services Board approved a number of measures aimed at cutting the Medicaid budget. They approved capping the Elderly, Blind, and Disabled (EBD) waiver. This measure, if approved by the federal Medicaid program, will limit the number of persons served in community settings to the roughly 12,000 who are currently receiving services. This would prevent new persons from receiving community-based services. How can the prevention of institutionalization occur if a person cannot receive home-based assistance?

A second cost cutting strategy would reduce payments to health care providers by perhaps 5% although early in the week of June 17 it was believed that the program funding most home health care was to be cut by up to 30%. Such a cut would have forced service providers to go out of business, forcing persons with disabilities to enter a nursing home.

A coalition of consumers, Colorado Cross Disability Coalition (CCDC) officials, Centers for Independent Living staff, and private agencies organized to oppose the Medicaid cuts. They developed a statement of their concerns and recommendations. Those recommendations included a call for the early implementation of Senate Bill 27, passed in the 2002 session of the Legislature. This legislation permits much more consumer directed attendant services as well as the use of family members to provide services. 

The coalition also asked that the cap on the EBD waiver not be implemented and that the consumer directed attendant services project, which will serve 150 persons, be speeded up and expanded. The coalition does not deny the need for the Medicaid program to cut up to $36 million dollars. It only asks that the Colorado Department of Health Care Policies and Finance (HCPF) work to find cost savings through the more rational and less restrictive use of the funds that are available. 

On Monday, June 24, the coalition met with Karen Reinertson, Executive Director of HCPF, to discuss their concerns. Ms. Reinertson told the group that she shared their concerns and that she was very pleased to work closely with them to find solutions that would protect the persons who need the services. She said that cuts, if needed, would be within 5% and that she would take another look at the EBD waiver. She also agreed to work with the coalition to write regulations needed for the implementation of SB 27. Ms. Reinertson and the coalition agreed to meet again on July 5 to continue their dialogue.

Leaders of the disability community used the ten days before the July 5 meeting to organize a rally to show the depth of feeling that exists in favor of living independently. “This is about freedom,” said David Bolin, Executive Director of the Boulder County Center for People with Disabilities. Mike McCarty spoke at the July 5 rally at the Capital. Up until a week before, this would have been impossible. On June 27, the 37-year-old McCarty ended his seven-year stay in a nursing home. “I have my freedom. It feels great, he said. “People like me will stay in nursing homes forever if we cannot provide home health care for everyone who needs it.” 

Over 300 persons from the disability community gathered at the Capital to express their support for the Olmstead decision that supports the need to provide services in integrated settings and to encourage HCPF to find ways to prevent cutting services. 

Julie Reiskin, Executive Director of Colorado Cross Disability Coalition, told the rally that a great deal of progress has been made but their participation is very important. She urged them to register to vote and go to the polls. “We need people who understand our issues and realize that what we are saying makes good public policy.”

When it was time to meet with Ms. Reinertson and her staff, Ms. Reiskin led a committee to the 4th floor of the Health Department to meet with HCPF officials. 

Karen Reinertson told the group that there is now an opportunity to redefine the long-term care program. “It’s a little scary, she said, “because if we don’t get it right we can do a lot of damage. I want your help, and we will be very careful, but we can do things the way you have wanted us to for a long time.”

Reinertson said that she had wanted to be sure that the program was safe, so she had supported a medical model, but Julie Reiskin had made an impression on her by saying, “We have a right to take a risk.” Ms. Reinertson said, “SB 27 offers an alternative to the medical model. We will work with you to fast track the implementation of the Act. We will ensure that there can be enough nursing services to meet genuine needs, but consumers will have a real choice and they will have real control over their own attendant services.”

Ms. Reinertson asked the committee if they were ready to make a substantial commitment to work with her staff to redesign the program. The disability community answered in the affirmative. Committees were set to meet during the week of July 8.

Less that ten percent of the disability community uses attendant services: yet this service has become the symbol of freedom for persons with disabilities. Community based services allow persons to leave nursing homes and other institutional settings. All of us who have disabilities know that freedom must be won over and over. We know the struggle that we wage, no matter what our disability, is about freedom. Is there anything better to represent the struggle for freedom than the escape from an unwanted placement in an institution?

“When you live in a nursing home, you can’t chose your roommate. You’re not free to come and go as you please, said Mike McCarty. “You do not control your own life. I feel like I have been paroled from prison.”

Can we know what those who are living in nursing homes against their will endure, and do nothing? Can any of us enjoy our freedom knowing that others are suffering? The freedom of each of us is defined by the freedom of all of us. If we do not value the potential of the most severely disabled person, we may find that our own potential is underestimated. If we want society to respect us, we must join the disability community in demanding respect for everyone. It’s all about freedom. 

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