Chuck Grassley

United States Senator from Iowa





Grassley Announces Major Bill for Special Needs of Children

Mar 21, 2000

Grassley Announces Major Bill for Special Needs of Children

? Joined by families and colleagues, Sen. Chuck Grassley today announced a major piece of legislation that will improve health coverage for children with special needs and protect their household income.

"When you're a parent, your main objective is to provide for your child to the best of your ability," Grassley said. "If it takes a 12-hour day in the field or in the factory, that's what you do. Our federal government takes this goal and turns it upside down for parents of children with special health care needs. The government forces these parents to choose between family income and their children's health care. That's a terrible choice, but we'll fix it."

Grassley said he will introduce the Family Opportunity Act of 2000 with Sen. Edward Kennedy (D-Mass.) today. Other original sponsors are Sen. James Jeffords (R-Vt.) and Sen. Tom Harkin (D-Iowa).

The announcement came at a Washington news conference. Accompanying Grassley and the other senators were two families who have children with multiple medical needs. Grassley invited Melissa Arnold and her sons, 10-year-old Adam and 17-year-old Daniel. The Arnolds must strictly limit their family income to keep Adam's Medicaid coverage. Adam was born with a short thigh bone, which doctors are slowly lengthening through multiple surgeries.

The Arnolds are originally from Red Oak, Iowa, but moved to a town near Baltimore, Md., after finding a surgeon there who specializes in Adam's form of treatment.

Grassley said families with children who have special health care needs -- like the Arnolds -- must strictly limit their income to qualify their children for both Medicaid and federal disability benefits. This means parents often refuse jobs, pay raises and overtime just to preserve access to Medicaid for their child with special health care needs.

The income restrictions apply to entire families and create hardship for everyone, Grassley said. He described how 17-year-old Daniel Arnold can't work even part-time for fear of jeopardizing his brother's Medicaid coverage. Melissa Arnold has accepted several promotions without the pay raises she's earned.

Despite these challenges, that family has stayed together, Grassley said. In the worst cases, parents give up custody of their child with special health care needs or put their child in an out-of-home placement just to keep their child's access to Medicaid-covered services.

Grassley said Medicaid is critical to the well-being of children with multiple medical needs. It covers a lot of services that these children need, such as physical therapy and medical equipment. Private health plans often are much more limited in what they cover. Many parents can't afford needed services or multiple co-payments out-of-pocket.

Grassley said the Family Opportunity Act of 2000 would create a state option to allow working parents who have a child with special health needs to keep working and to still have access to Medicaid for their child.

Grassley said parents would pay for Medicaid coverage on a sliding scale. No one would have to become impoverished or stay impoverished to secure Medicaid for a child.

The bill also establishes family-to-family health information centers, Grassley said. These centers would be staffed by actual parents of children with special needs as well as professionals. They would provide information to families trying to arrange health services for their children.

The Family Opportunity Act of 2000 is modeled after last year's successful Work Incentives Improvement Act sponsored by Kennedy, with Grassley as a co-sponsor. Under that law, adults with disabilities can return to work and not risk losing their health care coverage.

"Parents of children with disabilities should have the same opportunities as adults with disabilities," Grassley said. "Everybody wants to use their talents to the fullest potential, and every parent wants to provide as much as possible for his or her children. The government shouldn't get in the way."



The National Health Interview Survey and current Census data show that 8 percent of children in this country have significant disabilities, many of whom do not have access to critical health care services they need. In order for these families to get needed health services for their children, many are forced to stay impoverished, become impoverished, put their children in out of home placements, or simply give up custody of their children ---- so that their child can maintain eligibility for health coverage through Medicaid. Many employer health plans and a number of CHIP/SCHIP programs do not cover essential services that these children need to maintain and prevent deterioration of their health status. Medicaid can provide these comprehensive services.

In a recent family survey of 20 states, 64 percent of families with special needs children report they are turning down jobs, turning down raises, turning down overtime, and are unable to save money for the future of their children and family ---- so that they can stay in the income bracket that qualifies their child for SSI and/or Medicaid.

Currently, fewer than 4 percent of the 850,000 children receiving Social Security benefits leave the Social Security rolls due to increased family income, however many would if access to needed health services was available. More than half the States in this country are reporting increasing rates of families giving up custody of their children in order to secure needed health care services and supports.

The Family Opportunity Act of 2000 is intended to address the two greatest barriers preventing families from staying together and staying employed: (1) lack of access to appropriate services, and (2) lack of access to the advocacy and assistance services they need to help cut the "red tape" to meeting their children's health care needs.


Access to Health Care CoverageExpanding Medicaid Coverage Options. A new optional eligibility category will allow states to expand Medicaid coverage to children with disabilities up to age 21, who would be eligible for SSI disability benefits but for their income or resources. This option builds on previous reforms including the provision enacted in the Balanced Budget Act of 1997 (BBA) and the Ticket to Work and Work Incentives Improvement Act of 1999.

These provisions permitted states to offer a Medicaid buy-in for disabled workers who would be eligible for SSI disability benefits but for their income.

In order for a family to participate in the Medicaid buy-in for their disabled child or children, the family must take employer-offered insurance within the following guidelines: (1) the employer offers family coverage under a group health plan, and (2) the employer contributes more than 40 percent of the total cost of the annual premium for the coverage.

?If such coverage is attained by the family, the state is required to reduce the premium charged for the buy-in based on the employee's contribution for the employer coverage, the actuarial value of the health services provided to the child under Medicaid, or both.

?Participating states may charge premiums up to the full cost of the premium within the following guidelines --- (1) in the case of an individual who has an income at or below 300 percent of poverty, the premium (or combination of premiums) cannot exceed 5 percent of such income, (2) in the case of an individual who has an income above 300 percent of poverty, the premium (or combination of premiums) cannot exceed 7.5 percent of such income. No federal match will be provided to a state for services to a child whose family income is above 600 percent of poverty.

?For families who have income that does not exceed 300 percent of poverty, and for no longer than 12 months, a participating state has the option to pay for all or part of the employee premium for the employer-offered family coverage.

?An increased federal match for the administrative costs of the program will be available to participating states.

Option for States to Include Children Receiving Hospital Psychiatric Services in Home- and Community-Based Waivers

?States would be permitted to include disabled children receiving hospital psychiatric services in the state's home- and community-based service waiver.

Demonstration Program. A time-limited demonstration program allows states to extend Medicaid coverage to children who have a disability that without health care would become severe enough to qualify them for SSI. This demonstration will provide new information on the cost-effectiveness of early health care intervention for children with potentially significant disabilities. Each state that conducts a demonstration project will be required to submit an annual report on the use of funds, enrollment data, and financial statistics associated with the project. Funding of $300 million over 6 years will be available.

Access to Health Information and Resources

Establishing Family-to-Family Health Information Centers. The bill provides funds for establishing health information centers to assist and support families of children with disabilities and special health care needs. These centers, staffed by both parents of children with special needs and professionals, would provide technical assistance and accurate information to other families on various health care programs and services available and appropriate for children with special needs, including identifying successful health delivery models. In addition, these centers would act as a resource to health care insurers, providers, and purchasers in developing ombudsman models for collaboration between families and children.

COMMONLY ASKED QUESTIONSThe Family Opportunity Act of 2000

Q.What is the history of the legislation?

A.The Family Opportunity Act of 2000 is a follow-up to last year's Work Incentives Improvement Act, which allowed disabled adults to buy into the Medicare and Medicaid programs even if their salary surpassed the cap set by the programs. Before this legislation took effect, adults who made more than $500 a month were not eligible for Medicare and Medicaid. Many worked at low-paying jobs and could not afford private insurance. As a result, they were reluctant to enter into the workforce and purposely kept their incomes under the cap to remain eligible for Medicare. The act changed this predicament and allowed them to enter the workforce while allowing them to get the health care they needed.

Children with disabilities and their families face a similar situation. What happens when private insurance doesn't cover a child's physical therapy, but the family's salary surpasses the cap to receive Medicaid coverage? They end up paying huge out-of-pocket expenses for medical bills. In a number of cases, parents are forced to seek more drastic action to avoid debt. A good deal quit their jobs to become Medicaid-eligible again. Some couples divorce to keep their salaries low. Others relinquish custody or put their child in out-of-home placement because they simply can't afford to pay for appropriate care for their child.

The Family Opportunity Act will end this problem. It will allow children who qualify to be covered by Medicaid even if their parents have private insurance and are not eligible for the program under current law.

Q.Which children fall under the federal definition of disabled?

A.To be disabled under SSI, a child under age 18 must have a "medically determinable physical or mental impairment which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months." Medically determinable physical or mental impairments are listed under the SSI "List of Impairments."

Q.Will children be eligible for SSI in addition to Medicaid under the act?

A.No. They are only eligible for the Medicaid portion.

Q.Does each state have to participate? How much can a family make a year under the Family Opportunity Act to remain eligible for Medicaid?

A.Each state will decide whether or not to implement a buy-in program. Once a state decides to participate, it will decide its premium rates using a sliding scale based on the family's income. If a state chooses to participate, a family could decide whether or not to buy into Medicaid for their child with a disability. A family would not be expected to pay more than 7.5 percent of their annual income in premiums (private insurance plus Medicaid). Since Medicaid is always the payer of last resort, private insurance would be billed first. If private insurance does not cover a service, Medicaid would pay for the service if it is Medicaid-covered.

Q.Can families keep their private insurance and still be eligible for Medicaid in the program?

A.Yes, in fact, it's encouraged.

Q.How much money will be appropriated at the federal level to start the program across the nation?

A.For the demonstration projects which help states identify children with conditions that may lead to a potentially severe disability, $300 million has been requested over five years.

In the case of family-to-family health information centers, $10 million a year has been requested for six years.

Q.What will the demonstration projects do?

A.States will be able to apply for federal funds in order to provide the same Medicaid buy-in option to children with potentially severe disabilities who without access to the health care services through Medicaid can be reasonably expected to become severe enough to qualify them for SSI.

Q.Children have so many social agencies looking out for their well-being. Why do they need family health information centers set up by the act?

A.That is precisely why the health information centers are needed -- there are so many programs. Families report that they spend extraordinary amounts of time and energy investigating resources and coordinating their child's care.

Parents need a streamlined way to navigate the system. Each center would be run by parents who had been there before with their own children who had specific needs such as daily medication, a nurse visit to the home or a certain type of wheelchair. Parents also would receive training and guidance regarding caring for their children, identifying successful health delivery models and developing collaborative relationships with health care delivery systems. These centers would also act as a resource for health care insurers, providers, school systems and purchasers.

Statement of Melissa ArnoldWednesday, March 22, 2000
My son Adam is 10 years old. He has the rare orthopedic problem known as proximal femoral focal deficiency, a long medical name for "short thigh bone." It is not a life-threatening birth defect, but it is potentially crippling.
We are originally from Red Oak, Iowa. Over 20 doctors throughout the Midwest told us that amputating Adam's leg was the only way to help him. But through an article in People Magazine, we found a doctor in Baltimore who could save Adam's leg. We learned later that this doctor is, indeed, the only doctor on the planet who could save Adam's leg.
But as a recently divorced parent, I had no money. I had no insurance. And even if I had insurance, there's no way I could ever afford the 20% co-pay. And we found that Iowa Medicaid was not accepted in Maryland hospitals. So in May of 1996 my children and I left our family and friends and all that was familiar and dear to us in Iowa and moved to the Baltimore area to seek the care that Adam needed.
What a success this has all been! With tremendous strength and grace, Adam has gone through 9 medical procedures in 3 ½ years including two hip surgeries, one knee surgery, a major lengthening of his thigh bone, and corrective surgeries arising from complications. It has been a long and difficult journey, and we still have much more to go. But when Adam is grown, he will enter his adult life with two long strong legs, a whole healthy body. And all of this is possible because of SSI and Medicaid. Truly, Adam is one of the kids for whom the system was created, and we are grateful beyond words.
But there has been a major roadblock in our path. Since arriving in Maryland, I have moved up in my job from being a part-time weekend clerk to being Director of Marketing. I have worked hard to achieve this, and in the meantime we have gotten much help from family, friends, and our church family. But as much as I want to continue to move toward self-sufficiency, and as capable and determined as I am, we must continue to accept charity because government regulations regarding Medicaid and SSI have put a ceiling on how much I can earn without Adam losing his medical care. I can't accept any more raises. The President of my company's Board of Directors came to me recently to offer me a 20% increase in pay, but I had to turn her down.
I have a 17-year-old son who has integrity and ambition, and Daniel wants to work, but he can't because his income counts against us. He worked only part-time last year, and now I have to pay the government $2,000 in what they call SSI overpayments. The government says that Daniel's part-time minimum wage earnings were too much. Daniel is a bright young man who wants to start taking college courses, but he can't because I can't pay for it, and he can't work to earn the money for it. So we will continue to accept help to meet our needs. We will continue to be a drain on our church family and when we have to, we will continue to let my parents pay for some of our needs out of their Social Security checks. We have swallowed our pride and dug in our heels and determined as a family that we will do whatever we must to live on the $25,000 a year the government says is enough for raising two kids and living on the East Coast. It isn't really enough, of course, but we must do our best because we cannot, we will not, do anything to compromise Adam's medical care.
So Daniel, Adam, and I are here today to tell the world how deeply grateful we are to Senator Grassley and Senator Kennedy for having the compassion to introduce the Family Opportunity Act that will raise the income limits of families who need help in achieving their medical goals. It is an important piece of legislation that will help not only the Arnold family, but also hundreds of other families across this great country of ours who have their own medical challenges. Clearly the Family Opportunity Act shows that our government does still care about the needs of the American people. And so I say God bless Senator Grassley and Senator Kennedy. We are grateful that they are willing to stand up and fight for those of us who need them.