Health care reform bill holds promise for people with disabilities

Wednesday, December 23, 2009 | 8:38 p.m. CST
Leslie Anderson, program manager at Services for Independent Living, sits for a portrait at her desk on Dec. 14. Anderson has been working for the agency since 2007 but has been involved with organizations that provide assistance to the disabled since 1993.

COLUMBIA — In 1997, DeAnna Noriega owned and operated two restaurants in Columbia. As a self-employed small-business owner, she could buy coverage for her husband and children but not for herself through her business.

Childhood glaucoma had rendered her partially blind, and insurance companies refused to cover her with this "pre-existing condition," Noriega said.

More information

The House bill, if passed as proposed, would ...
  • Level the playing field. Pre-existing conditions would be a thing of the past as would annual and lifetime coverage caps. The bill would require the immediate creation of a high-risk pool to cover this population before insurance reforms are fully implemented.
  • Provide long-term care. The House voted to establish a national, voluntary insurance program for purchasing community living assistance services and supports, the CLASS program. After five years, the program will provide individuals with functional limitations a cash benefit of not less than an average of $50 per day to purchase nonmedical services and supports necessary to maintain community residence. The program, effective in 2010, is financed through voluntary payroll deductions. All working adults will be automatically enrolled in the program, unless they choose to opt-out.
  • Expand coverage. Insurance plans would be required to cover rehabilitation and habilitation services, durable medical equipment, prosthetics, orthotics and related supplies, vision and hearing services and behavioral therapy. Mental health coverage would also be expanded for individuals covered under large group plans.
  • Boost Medicaid. The federal government would increase funding for Medicaid, while expanding eligibility for the program and increasing reimbursement rates to doctors. 
  • Provide accessibility. Disability would be added to the list of health disparities so that research can be conducted regarding the accessibility of health care for this population. Standards would be created for accessible medical equipment like exam tables and X-ray machines.
The Senate bill, if passed as proposed, would ...
  • Support the House proposals.
  • Propose a Community First Choice Option. The bill would establish the option in Medicaid to provide community-based attendant supports and services to individuals with disabilities. States choosing to use the Community First Choice option would get a 6-percent increase in the federal Medicaid match rate. The option would create incentives for people with disabilities to leave care facilities and institutions and live in their own homes and communities with cost-effective services and support. It would be effective on Oct. 1, 2010.
  • Propose cash benefits. It also proposes to create a voluntary federal program that will offer long-term care insurance and cash benefits to people with severe disabilities.

Source: Kaiser Family Foundation

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She didn't need surgery; relatively inexpensive eye drops did the trick. "I didn't have a huge out-of-pocket (expense), but no company would insure me," she said.

Noriega's situation — not an unusual one — might be resolved if either the House or  Senate health care reform bills prevail. Both have proposed to end private insurers' practice of excluding people with pre-existing conditions.

Health care reform proposals also seek to prevent insurance companies from placing annual or lifetime caps on coverage. Coverage will be extended to essential medical equipment, such as wheelchairs and augmentative communication devices, as well as prosthetics and orthotics for skeletal or muscular deformities.

The Senate bill also seeks to establish a Community First Choice option, which will encourage states to supply Medicaid home- and community-based attendant services.

All of these proposals have huge implications for people with disabilities, caregivers and insurance companies.

High premiums

Of the 300 million Americans, nearly 176 million — or 58 percent of the population — are covered by employer insurance, according to U.S. Census Bureau data. Noriega couldn't go that route. After she sold her two restaurants, Noriega said she couldn't find work through an employer because of her disability.

"It's very hard to get employed because the employer and other employees (in that pool) have to pay higher premiums," she said.

Employer-sponsored health insurance premiums have nearly doubled since 2000, a rate three times faster than the rise of wages, according to the Kaiser Family Foundation. In 2008, the average premium for a family plan purchased through an employer was $12,680, nearly the annual earnings of a full-time minimum-wage job.

But going to the "individual" market is not attractive either, as individual premiums are often higher than employer's premiums.

Noriega now works as the legislative liaison officer at Services for Independent Living, a nonprofit organization in Columbia that is required by law to employ disabled people. At least 51 percent of its staff has to be people with disabilities.

The health insurance market can be a tough place to negotiate. But it's especially difficult for people with disabilities with pre-existing conditions and sometimes expensive health needs.

"It is difficult for people with insurance, who have coverage through employers such as governments and universities, to comprehend the difficulty of getting health insurance," said Tim Harlan, former Missouri representative and attorney with Harlan, Harlan and Still in Columbia.

Pre-existing conditions clause

One of the proposals in the health care reform debate that has the potential to affect a large number of people seeking insurance coverage is the elimination of pre-existing conditions exclusions. 

"The pre-existing conditions clause is very broad, and people with extremely minor disabilities, such as well-controlled diabetes, can be denied insurance," Harlan said.

Insurance companies often don't want to write policies for smokers and sometimes charge women more than men, Harlan said.

"The problem got worse as we got accurate ways to test health conditions, which means people with no disabilities but with a propensity toward a condition might be denied coverage," he said.

A private company can decide whether to take on the health risk of a potential employee, and the decision may depend in part on how big the company is. If the company employs several thousand people, the costs are spread across all the employees. But if it is a small company with few workers, one higher-risk employee can make a difference in the company's overall costs.

Harlan left the legislature in 2002 and now specializes in Social Security benefits. He said he still hears complaints that a person's disabilities affect job prospects.

"I explain to them that that's what the law allows," he said.

When Blue Cross Blue Shield started in Texas in the 1920s, the original intent was to spread the risk, he said.

"With private insurance companies, the intent has evolved into avoiding the risk," Harlan said.

It is also difficult to get covered by Social Security benefits. In central Missouri, it usually takes a person two-and-a-half years to receive Social Security benefits, Harlan said. In some parts of the country, the wait time is twice as much.

Mary Moody is a 45-year-old who has a neurological disorder that gradually increases weakness in the legs and arms. She said she received disability benefits from the state for the disorder right after applying. Later, when a brain injury caused her to have short-term memory loss, she had to wait years to receive disability benefits.

"I had to get an attorney for this, but it was difficult to prove that memory disability as disabling," Moody said. She had hired Harlan.

But short-term memory loss is a disability, she said because "it is difficult for me to remember what I did yesterday."

Independent living

Moody lives at home and hires a personal assistant from the Services for Independent Living who helps her buy groceries and reminds her to pay bills and take medicines. She prefers to stay at home rather than move into a nursing home because she said she is able to carry out most daily activities, such as cooking and bathing, by herself and doesn't need nursing home services.

Organizations such as Services for Independent Living help people with serious disabilities carry on their daily activities by providing direct services. Over the years, however, cutbacks in state funding for people with disabilities have affected services for assisted living, Harlan said.

According to Jim Crane, office manager at Services for Independent Living, the agency has already received notice of a 10-percent funding reduction from the Missouri Department of Transportation. Although the cut amounts to $500, Leslie Anderson, program manager at the organization, said she realizes funding reductions are inevitable. The agency receives funds through multiple sources.

The money received from MoDOT supports the organization's transportation program. The Services for Independent Living offers 1,200 free rides a month to people with disabilities to help buy groceries, meet doctors' appointments, visit places of worship or attend community events. People come to know about its services through medical organizations and other outreach efforts.

More than 100,000 people lost their services in the state when Missouri cut Medicaid funding in 2005, Anderson said. Medicaid reimbursement rates from the Consumer Directed Services program partially fund many of the agency’s services, including transportation, home modifications, such as ramps, and adaptive technology, such as emergency telephone dialing.

"If people with serious disabilities live in nursing homes, it not only disrupts their daily lives but is also expensive for taxpayers," Harlan said.

There will be more funding cuts. Democrats want cutbacks in payments to home health agencies that provide nursing care and therapy to Medicare beneficiaries at their homes. Democrats said they want to eliminate waste and inefficiency in home care services.

The health care bill looks to reduce Medicare spending on home care by $43 billion, or 13 percent of the current spending, over the next 10 years.

The Democrats hope to fund coverage of  uninsured people through the reductions. 

Prohibition of lifetime caps

The health care reform bill also proposes a revision of private insurance company regulations that will increase the number of insured people. It would bar insurance companies from placing lifetime limits or unreasonable annual limits on individual and group health plans.

"Once the policy holder crosses the cap, it is as good as having no insurance," Harlan said. And for people with disabilities, the treatment costs are usually higher than others, so they tend to exceed their cap easily. If the proposal makes its way into law, people with disabilities will find it a little easier to finance medical care.

Public option

A public option is one of the most important proposals for people with disabilities in the health care reform debate, Harlan said.

People in rural counties find it is hard to get private insurance coverage because it costs companies more, he said.

Right now it is unclear whether a public option will remain in the final bill. "But as a rural state, we should be concerned if a public option is not available," Harlan said.

Other proposals that could affect people with disabilities are still on the table. Cuts in funding, meanwhile,  continue to affect organizations such as Services for Independent Living.

"With each round of cuts, we will have to become more creative in seeking funding opportunities," Anderson said.

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theresa smith October 13, 2010 | 3:19 p.m.

Well the thing is that you cannot find insurance if you have a pre-existing condition. The only insurance available is the high risk pool and that is approx. 900 a month per person. Who can afford that? We make $1,200 a month. There is no way we could afford that.

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