Government Report 

The U.S. Supreme Court has decided to hear arguments in two cases which question the constitutionality of the Americans with Disabilities Act (ADA). The cases have been consolidated in University of Alabama v. Patricia Garrett, et al. The question that the Court will consider is whether the Eleventh Amendment to the Constitution prevents suits in federal court under the ADA against non-consenting states. In other words, the cases challenge whether Congress had the power to enact the ADA.

The two cases in Garrett are employment discrimination cases against two different departments of the state of Alabama. Patricia Garrett was a nurse serving as Director of Obstetrical/Neonatal Services at the University of Alabama Hospital in Birmingham. After she was diagnosed with breast cancer and began treatment, she was forced to take leave, demoted, and transferred with a cut in salary despite her desire and ability to continue in her job. Milton Ash is a security officer for the Alabama Department of Youth Services. He has chronic asthma, sleep apnea, obstructive pulmonary disease, and diabetes. He has requested reasonable accommodations as follows: enforcement of the “no smoking” policy in the gatehouse where he spends a great deal of his work time; regular maintenance on the vehicles he drives so that he is not subject to fumes such as carbon monoxide in the passenger compartment; and working hours during the first shift (to accommodate the sleep apnea). His employer refused to make the accommodations and he indicates that he has been subjected to retaliation.

The cases follow on the heels of the Court’s decision in Kimel v. Florida Board of Regents where the Court found that Congress did not have the authority to apply the Age Discrimination in Employment Act (ADEA) to the states. The Court found that the substantive requirements of the ADEA are “disproportionate to any unconstitutional conduct that conceivably could be targeted by the Act” and that extension of the ADEA to the states was an “unwarranted response to a perhaps inconsequential problem.”

The Court’s decision in these cases could call into question the constitutionality of the entire ADA or could focus on specific sections of the law. Without question, a loss in Garrett would be devastating to people with disabilities, including people with mental retardation.

The Court will hear arguments in its new term beginning in October. Although there is no firm schedule yet, the Court rules call for the briefs of Alabama and any supporting amicus briefs to be submitted in late May/early June, while the briefs of Garrett and Ash and any supporting amicus briefs would be due in late June/early July.

Budget Allocations Released
Spending Bills put on Fast Track

The Arc closely monitors two of the 13 appropriations bills: the Labor, Health and Human Services and Education (L-HHS-ED) and the Veterans Affairs and Housing and Urban Development (VA-HUD) spending bills. These two bills provide funds for most of the discretionary programs important to people with mental retardation and their families.

The L-HHS-ED spending bill is the largest of all 13 spending bills. It funds all education, employment and training, developmental disabilities, and some health and prevention programs. It is also usually the most difficult spending bill to pass because it funds so many programs and because it is a magnet for controversy. The Senate L-HHS-ED subcommittee received $100 billion for all of its discretionary programs. This amount is a slight increase over the FY 2000 level. The House allocation is $98.5 billion, almost a freeze compared to current spending.

The House and Senate VA-HUD subcommittees that fund housing, space and veterans programs received approximately $76 billion. (See related article)

The budget allocations are a result of the tight FY 2001 budget resolution that was passed earlier this spring (see April 5 Government Report). The final budget resolution, which sets overall spending limits for all spending and tax decisions, limits the total discretionary spending to $600.3 billion. This represents a $20 billion increase over FY 2000 discretionary spending. However, most of the increase is directed toward defense spending. The domestic discretionary budget level is $20 billion below what would be needed to maintain level funding for its programs.

This year’s low allocations also reflect $4.9 billion in offsetting adjustments in the budget resolution to make up for the delayed obligations and other accounting gimmicks appropriators used in the FY 2000 omnibus spending bill to keep from breaking the budget caps. Those offsets account for $2.6 billion in the L-HHS-ED allocation and $1.8 billion in the VA-HUD allocation.

Last year, the L-HHS-ED bill was dealt with last and, by that time, a lot of its allocation had been “stolen” to help pass all the other appropriations bills. This caused the appropriations battle to drag into late November and forced the Republican majority to use all kinds of budget gimmicks to find enough money to allow its passage. The Republican strategy this year is to move the more difficult bills — including the L-HHS-ED bill — first. The House and Senate appropriations subcommittees scheduled markups of the L-HHS-ED bill for May 10 with full committee markups to follow quickly thereafter. The VA-HUD bill is expected to be marked up in the House the week of May 22 and in the Senate in mid-June.

President Clinton has already warned that several of the appropriations bills might draw a veto. The White House is urging Congress to raise the discretionary spending levels.

The Arc testified before the House Appropriations Subcommittee for the Departments of Housing and Urban Development, Veterans Affairs and Independent Agencies (HUD-VA) on April 13. The Arc’s witnesses were Kathy McGinley, Assistant Director of the Governmental Affairs Office and Tim Quinn, Executive Director of The Arc of the Northern Chesapeake in Maryland. Rep. Rodney Frelinghuysen (R-N.J.), a strong supporter of The Arc’s efforts in the area of housing, chaired the Subcommittee hearing.

The House HUD subcommittee has provided tremendous support over the past several years. While the rest of Congress ignored the housing crisis faced by people with mental retardation and other disabilities, the members of this subcommittee recognized that their needs cannot be ignored.

Unfortunately, it looks as if this could be a very bleak year for housing. The House VA-HUD Appropriations Subcommittee is expected to mark up its FY 2001 appropriations bill the week of May 22. The House subcommittee allocation is $76 billion (after adjusting for “gimmicks’ from last year’s appropriations process). The Senate subcommittee allocation is similar. Senate action is scheduled for June.

Pressure on housing appropriations is compounded by strong political desires to increase funding for veterans’ medical care and other popular programs funded by the subcommittee. Appropriations staff are pessimistic about any increased funding for HUD programs.

Several factors contribute to the housing crisis faced by people with mental retardation: (1) the lack of a comprehensive federal housing policy for people with disabilities ranging from rental assistance to homeownership; (2) the lack of affordable housing and tenant-based rental assistance and the continued under-funding of the Section 811 program; and (3) continued widespread discrimination and "Not In My Backyard" (NIMBY) policies.

The Arc’s testimony reflected the need for a range of housing options in the community as demonstrated through the national "A Key of Our Own – Unlock the Waiting List" campaign and our belief that people with mental retardation and other disabilities are entitled to a fair share of federal housing resources. Following is a summary of The Arc’s testimony.

The Arc’s Testimony

Approximately 48 percent of people with mental retardation and other developmental disabilities, who receive a variety of supports, live at home with their families. Innumerable adults with mental retardation wait at home with aging parents for housing and other supports. These are the parents who decided 30-40-50 years ago to resist the pressure to institutionalize their children and kept them at home with their families. These are the families that, in doing so, each saved the state and federal governments over one million dollars. The average cost of institutional care is more than six times the average cost of community-based care -- $94,348 for institutional care v. $14,902 for community-based care. In addition, too many adults with mental retardation still wait in large inappropriate institutions and more and more people with mental retardation are being found among the homeless.

There are over four million people with disabilities for whom Supplemental Security Income (SSI) is their primary source of income. Federal SSI benefits of approximately $500 a month (24 percent of median income nationally) do not allow most people with disabilities to afford a decent apartment or house without some type of assistance. Thousands of people with mental retardation work at very low-paying jobs and need some assistance from the federal government to find housing.

Last year Congress passed the Ticket to Work and Work Incentives Improvement Act to remove some of the disincentives people with disabilities face when they get a job – like the loss of health care coverage through Medicaid or Medicare. The current reality is that, even with a chance to make more money, most people with disabilities remain among the very poor and remain in need of some housing assistance if they are ever going to be able to live a stable and productive life in the community.

In June 1999, the U.S. Supreme Court issued the landmark Olmstead decision. This decision requires states to provide services and supports to people with disabilities in the most integrated setting appropriate. This decision should provide the impetus for developing more affordable housing options for people with disabilities. First, states should become less reliant on large, expensive, segregated institutions. Second, communities will be where people with mental retardation and other disabilities find needed supports and services. Obviously, more affordable housing for people is a critical part of this picture and will help states and communities implement the Olmstead decision.

The Arc Recommendations

The Arc believes that people with mental retardation and other disabilities are entitled to a fair share of federal housing resources.

1. Section 8 Tenant-Based Rental Assistance

The Arc believes that Section 8 tenant-based rental assistance is an effective tool for helping people live in their home communities. HUD’s FY 2001 budget includes a first time request for only $25 million for 5,000 vouchers. This program is currently funded at $40 million. The Arc recommends $50 million for Section 8 tenant-based rental assistance specifically for people with disabilities and these funds should be available to non-profit disability organizations.

2. Section 811 Supportive Housing for Persons with Disabilities

The Arc has major concerns with HUD’s FY 2001 appropriations recommendations for the Section 811 program. Section 811 plays an important role in producing new housing, while assuring a level of individualized supports required by many individuals with severe disabilities. The Arc has worked to shape the Section 811 program so it can help provide small, scattered-site housing in the community for people with disabilities. This year HUD recommended $210 million for the Section 811 program. However, The Arc recommends an increase to $300 million.

The Administration proposes targeting 50 percent of Section 811 funds to tenant-based rental assistance. The Arc recommends that Congress reject this proposal. The Section 811 program has played a critical role in housing production and has added to the stock of affordable and accessible housing. Tenant-based rental assistance is only one part of the picture. In some parts of the country, there is no affordable housing for people to rent.

Special Education Caught Up in
Larger Political Education Battles

The Senate is currently debating the reauthorization of the Elementary and Secondary Education Act (S. 2). The reauthorization process is providing an election-year battleground for competing education proposals put forth by Republicans and Democrats. It has also provided a new vehicle for those who continue to push for amendments that would erode the rights of students with disabilities under the Individuals with Disabilities Education Act (IDEA).

The latest amendment was expected to be offered by Sen. Ashcroft (R - MO) as Government Report went to press. It adds drugs, assaults, and threats of assaults to weapons as events over which local school authorities could suspend or expel children with disabilities. It would not require that there be a finding as to whether the offense was a “manifestation" of the child's disability. Schools would have the option of serving or not serving a child during suspension or expulsion. The right to a free and appropriate public education, FAPE, would not be guaranteed.

The Arc believes that schools are already given ample authority under the 1997 law to maintain environments conducive to learning. (See The Arc Q&A: The Individuals with Disabilities Education Act Amendments of 1997).

Moreover, law enforcement agencies across the country report that ceasing education services for any child only increases juvenile crime. Research demonstrates that cessation of education services leads to increases in illegal drug use and youth incarceration as well as in juvenile crime.

Bill to Increase Funding
for IDEA Passes House

Legislation related to improving children’s health or preventing disability and illness is one of the few hot issues moving forward on Capitol Hill this session of Congress. Action in the Senate has been concentrated on the Family Opportunity Act of 2000, S. 2274 and action in the House has been concentrated on the Children’s Health Act of 2000, H.R.4365 (previously H.R. 3301).

Family Opportunity Act of 2000

The Family Opportunity Act of 2000 was introduced by a bipartisan group of Senators on March 22 and was one of the topics covered at The Arc’s Governmental Affairs Seminar in April. The bill’s major sponsors are Sens. Grassley (R-Iowa), Kennedy (D-Mass.), Jeffords (R-Vt.), and Harkin (D-Iowa). It currently has 14 additional co-sponsors (see sidebar). The goal of S. 2274 is to give more children with disabilities access to a broad range of needed health care services and supports. The bill would allow states to offer middle-income families of children with disabilities the option of buying into Medicaid. Currently, these children are ineligible because their families make too much money. Because of this restriction, they are often uninsured or underinsured because insurance is not available through an employer, is too expensive, or has a very limited benefit package. In addition, parents are forced to remain in dead-end jobs to keep some health insurance or forced to turn down jobs in order to access federal health benefits.

Giving parents the option of buying into Medicaid and paying on a sliding scale basis would give children with disabilities in these families access to the full range of Medicaid services. This provision, along with the demonstration program in the bill that would allow states to cover children with “potentially severe disabilities,” promises improved overall health, the prevention of future disabilities, and a better chance for children to live full and healthy lives with their families in their home communities. A third section of the bill would provide funds for the development and support of “family-to-family” health information centers. The Family Opportunity Act builds on the bipartisan Ticket to Work and Work Incentives Improvement Act enacted last year -- this time removing barriers to employment for parents of children with disabilities.

The Senate sponsors of the bill want to build strong bipartisan support for it so that it can move swiftly through that chamber. Currently, there is no companion bill in the House. However, a number of Representatives on both sides of the aisle have expressed an interest in introducing the bill. Numerous members of The Arc have spoken with their Senators and Representatives or their staff about this bill when they were in Washington for the Governmental Affairs Seminar and/or in their home districts. In almost every case, the response has been positive. On another positive note, the House-Senate budget resolution conference report included $25 million to fund the first year of the Family Opportunity Act and $150 million over five years. Sen. Grassley stated “this is a down payment on our bill…..it shows support for our simple idea, which is helping parents provide for their special needs children….”

Staff of The Arc worked closely with Senate staff developing this piece of legislation and in gathering stories of families who would benefit by such a measure. This effort will continue.

The Children’s Health Act of 2000 (originally H.R. 3301) was introduced by Rep. Bilarakis (R-Fla.) last November and referred to the House Commerce Committee Subcommittee on Health and the Environment. Rep. Bilarakis is Chairman of this subcommittee. The original bill had strong bipartisan support for the most part, including the support of Rep. Brown (D- Ohio), Ranking Member of the Health and Environment Subcommittee. H.R. 3301 had 61 co-sponsors.

Unfortunately, action on the bill was slowed when Rep. Bliley (R-Va.), Chairman of the House Commerce Committee and Rep. Dingell (D-Mich.), Ranking member of the full committee, wanted to add a number of provisions to the bill related to adoption and tobacco. After much debate, a revised bill (H.R. 4365) was introduced on May 3 by Reps. Bilarakis and Brown. This new bill included a section devoted to the provision of information on the option of adoption. The final language in this section was an attempt to reach a compromise between so-called “pro-choice” and “pro-life” advocates. Efforts by advocates, including The Arc, and the bill’s sponsors got the bill moved out of the Commerce Committee and directly to the House floor where it passed on May 9 by a vote of 419-2.

This legislation has important prevention implications, not the least of which is the establishment of a National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention. The Arc has supported the movement to this type of focused center for several years. All of the existing CDC activities related to birth defects, folic acid, cerebral palsy, mental retardation, child development, newborn screening, autism, fragile X syndrome, fetal alcohol syndrome, pediatrics, or disability prevention would be concentrated in one center. The duties of this center would be to collect and analyze data on the incidence and prevalence of disabilities; to operate regional research centers on prevention; and to provide the public with information and education on these issues.

Some of the other provisions in the bill would: establish surveillance and research programs on autism, as well as expanding existing autism work at the National Institutes of Health; authorize research into fragile X syndrome; and authorize a national public health campaign and other activities related to epilepsy.

This bill now moves to the Senate, where Sens. Frist (R-Tenn.) and Kennedy (D-Mass.) are working together to draft similar legislation.

Other Health Issues

GAO to Study Sub-minimum Wages
Under the Fair Labor Standards Act

Congress And Administration Turn Spotlight
on Social Security Representative Payees

Over the last couple of months, issues regarding the oversight of Social Security representative payees have come to the forefront. Approximately 6 million Social Security and Supplemental Security Income beneficiaries have representative payees, often family members or friends, who receive the benefits on behalf of the beneficiaries and have a responsibility to manage the benefits on behalf of the beneficiary.

Most of the current concerns about the system involve organizations that serve under Social Security Administration guidelines as rep payees for about 750,000 beneficiaries, as opposed to the individual rep payees who often act on behalf of family members or friends. A great deal of the recent attention to the rep payee issue is due to a 20/20 television news story about one particular organizational representative payee in West Virginia that absconded with the funds of Social Security and SSI beneficiaries, leaving some of them penniless and homeless.

The Social Security Administration has proposed legislation that would strengthen its ability to address abuses by rep payees. In addition, the Senate Special Committee on Aging and the House Ways and Means Subcommittee on Social Security held hearings in May on abuses in the system and proposals to address the issues.

The SSA proposal would:

• require non-governmental fee-for-services organizational rep payees to be bonded and licensed under state or local law;
• provide that when an organization has been found to have misused an individual’s benefits, the organization would not qualify for the fee;
• allow SSA to re-issue benefits to beneficiaries whose funds had been misused; and
• allow SSA to treat misused benefits as “overpayments” to the rep payee, thereby triggering SSA’s authority to recover the money through tax refund offsets, referral to collection agencies, notifying credit bureaus, and offset of any future federal benefits/payments.

The Arc and the Social Security Task Force of the Consortium for Citizens with Disabilities have indicated support for the SSA proposal with the qualification that what constitutes “misuse” must be defined in the statute, rather than left up to administration policy.

Other bills have been introduced to also address the representative payee issues. From the Members’ discussions and questions at the Congressional hearings, there appears to be significant bipartisan interest in passing legislation this year.

A total of 365 people came to Washington, D.C. on April 9-11 to attend this year’s annual governmental affairs seminar. This record number of participants was due to a number of hot current legislative issues and the first-time collaboration of The Arc of the United States with the American Association on Mental Retardation (AAMR).

Seminar participants learned about current legislative issues important to people with mental retardation from The Arc Governmental Affairs staff and other national experts. They heard presentations by some of Washington’s top experts on federal budget and appropriations, employment, health care, housing, long-term services and supports and developmental disabilities and family support. A former Hill staff person gave a workshop on how to lobby Members of Congress at the federal level. Another session was designed to help individuals unravel the mysteries of the often-confusing federal budget and appropriations process.

Fact sheets were provided to people to give to their Members of Congress as well as simplified talking points for them to use in meetings. Pre-registrants got lots of information ahead of time to help them get ready.

The Arc presented its first-ever John H. Chafee Award in Public Policy to Rep. Rick Lazio (R-N.Y.) on April 11. Sen. William V. Roth, Jr. (R-Del.), another recipient of the award, was unable to attend due to illness. The Arc will present the award to Sen. Roth at a future date. The award was given to Lazio and Roth for their leadership that led to the passage of the Ticket to Work and Work Incentives Improvement Act of 1999.

A Benefit Roast of Paul Marchand attracted almost 400 people and raised nearly $15,000 for the Dr. Elizabeth Boggs Fund to help The Arc advance public policy and advocacy in the pursuit of equality and justice. There is an ongoing effort to raise money for this fund. To contribute to the Bogg’s fund in Paul’s honor, send your check (any amount) to The Arc, 1212 Wayne Ave., Suite 650, Silver Spring, MD 20910.