Letter to Vice President Biden
Vice President Biden: I am the chairperson of Together for Choice (TFC). TFC is a nationwide disabilities advocacy group representing individuals with disabilities, their families, and the providers that serve men and women with disabilities. The primary focus of TFC is on the needs and preferences of individuals with significant intellectual disabilities. These men and women, intellectually, often operate at the five or six year-old level or less. My daughter Sarah is a good example. She is 38 years old, has cerebral palsy, and intellectually is about three to four years old. She uses a wheelchair and needs help with all activities of daily living, i.e., bathing, dressing, toileting, feeding and medicating. She needs 24/7 care and supervision. TFC’s overriding position is that the disabilities community is very diverse, involving a wide range of abilities and preferences. In establishing policies for this diverse community, there are no one-size-fits-all solutions. Instead, federal and state governments must support a wide range of options and allow the individuals and families to choose the solutions that best meet their specific needs and preferences. It is through this lens that we viewed Vice President Biden’s disabilities policy statement.
TFC applauds many aspects of Vice President Biden’s policy statement. However, there are a few aspects of the statement that raise concern because they fail to recognize the needs and preferences of individuals with significant intellectual disabilities. It appears that in putting the statement together, the Biden campaign listened primarily to the voices of certain disabilities advocacy groups that favor one-size-fits all solutions in the name of “civil rights” that would actually decrease the choices of, and cause harm to, those with significant intellectual disabilities. We request that the Biden campaign (1) recognize the wide diversity of needs and preferences of the disabilities community; (2) listen to the voices of those with significant intellectual disabilities; and (3) approach disabilities issues with more nuance so as to embrace choice instead of one-size-fits-all solutions. In particular, our concerns about the Biden disabilities policy statement are as follows.
1. Guardianship. TFC supports individuals with disabilities making decisions about their own lives to the extent they are capable of doing so. However, it is important to recognize that those individuals with significant disabilities require a guardian to make all significant decisions. My Sarah is just one example. With her intellectual challenges, she needs her parents/guardians to make all medical and other important decisions. We do so in her best interests and by discerning her preferences. The Americans with Disabilities Act should not be applied in manner that deprives Sarah and her peers of the guardianships they need to live safe, happy and fulfilling lives.
2. Residential and Vocational Settings. TFC supports the primary sections of the Home and Community-Based Settings Rule, i.e., the sections dealing with person-centered planning. However, the parts of the Settings Rule which define what constitutes a “home and community-based setting” are far too prescriptive, limit housing and vocational options, and deprive individuals of choice. The Settings Rule favors small homes in neighborhoods for individuals with disabilities over campus settings, farmsteads and other intentional communities, even though there are segments of the disabilities community, especially those with significant intellectual disabilities, who find such settings best meet their needs. Many states are applying the Settings Rule in a manner that preclude campus settings, farmsteads and intentional communities from receiving Medicaid funding. This is forcing individuals out of the homes of their choice and into small neighborhood homes or apartments which they find isolating and harmful due to their particular needs.
The Settings Rule and the manner in which it is being applied is a perfect example of a one-size-fits-all solution that is causing real harm to segments of the disabilities community. The sad fact is that small neighborhood homes often do not provide quality lives for individuals with intellectual disabilities. As just one example, Illinois, where I live, recently evaluated its home and community-based settings along 17 quality metrics. It found that the home and community-based settings in Illinois failed ALL 17 quality metrics, including failing to integrate the men and women living in these homes in the surrounding community. Individuals with intellectual disabilities and their families must be permitted to choose the setting that best meets their needs. The federal and state government should focus on the quality of the setting, not its size, type or location.
Recognizing choice includes the choice of living in an intermediate care facility for the developmentally disabled (ICF/DD). These are the so-called “institutions” that many advocacy groups denigrate and which the Biden policy statement also treats with disdain. The fact is that privately operated ICF/DDs are the choice of thousands of men and women with intellectual disabilities across the country because these settings provide quality care and programing. My wife and I chose and ICF/DD for our daughter because after thoroughly reviewing and evaluation all residential options in our area, the particular ICF/DD we chose, Misericordia, was the option that Sarah preferred and would best serve her individual needs. Our choice was not based on the initials by which a setting was designated (ICF/DD or HCBS). It was based on the quality of programming. The choice of an ICF/DD must be respected and preserved. TFC supports the need for adequately funding home and community-based settings and the end of waiting lists for these settings. But, this must not come at the expense of ICF/DDs. All quality choices need to be preserved and adequately funded.
3. Special Wages Under Section 14(c) of the Fair Labor Standards Act. TFC strongly opposes the Biden policy statement’s support of the Transformation to Competitive Employment Act and the repeal of Section 14(c) of the Fair Labor Standards Act. The campaign’s position fails to recognize that those with significant intellectual disabilities cannot hold competitive integrated employment. Many of these men and women prefer day programing or work programs with their peers. Almost all programs using the special wages permitted by Section 14(c) of the Fair Labor Standards Act are non-profit providers of services to men and women with intellectual disabilities. These providers create work programs especially for these men and women. The purpose of these programs is not to generate revenue or profit. It is to teach employment skills and give these men and women the joy and satisfaction of engaging in productive activities. The only way these programs can survive is by paying the special wages permitted by Section 14(c). Eliminating Section 14(c) will result in these work programs closing and men and women with significant intellectual disabilities losing their jobs. The empirical evidence shows that these lost work programs jobs will not be replaced by competitive integrated employment. Instead, these men and women will spend their days in day programs or going to shopping malls or the movies. This is another issue that does not require a one-size-fits-all solution. Rather than repeal Section 14(c), the statute can be amended so that special wages are only available to those with significant intellectual disabilities who make the informed choice to work in work programs offered by non-profit providers whose purpose is to offer programs serving these men and women. Taking this more nuanced approach would all anyone who wishes competitive integrated employment to have that opportunity while preserving work programs for those who prefer that setting. Many advocacy groups cast the repeal of special wages as a civil rights issue. The real civil rights issue is the preservation of choice. Surveys of individuals with disabilities taken over the past year by the Department of Labor and the U.S. Commission on Civil Rights found strong support for the continuation of Section 14(c) and the work programs this section supports among those with significant intellectual disabilities. Eliminating this choice would violate these individuals civil right to make the same choices the rest of us make regarding how we spend our days.
We strongly urge the Biden campaign to avoid advocating policy positions that will actually cause harm to certain segments of the disabilities community. We are happy to discuss these issues with the appropriate individuals in the Biden campaign and provide any additional information the campaign may desire.
Scott M. Mendel K&L Gates LLP 70 W. Madison St.
Suite 3100 Chicago, IL 60602 Phone: 312.807.4252 Mobile: 847.436.4188 firstname.lastname@example.org