State Settles with DLC in Action Over the Treatment of Intellectually and Developmentally Disabled in Intermediate Care Facilities
By Ken K. Gourdin
In Christensen, et al. v. Miner, et al, 2:18-cv-00037, filed in the U.S. District Court for the District of Utah, the Disability Law Center (DLC), Utah’s Protection and Advocacy Agency which is charged specifically by the federal government with protecting the rights of Utah’s disabled, sued over Utah’s practice of shunting those with intellectual and developmental disabilities into Intermediate Care Facilities (ICFs).
1. How ICFs Often Have Infringed Upon the Rights of Their Residents – Often, ICFs have been crowded facilities with several residents housed in each room and where, thus, individual residents are afforded little privacy. The complaint details how residents of Intermediate Care Facilities (ICFs) have their independence, autonomy, self-determination, and other rights abridged by ICF staff. A couple of paragraphs, in particular, stood out to me as examples of how ICFs abridge the rights of their residents. Paragraph 34 is a good example. Referring to one of the named Plaintiffs in the DLC’s suit, In part, it reads:
Mr. Weakly enjoys technology, particularly Apple products. While Mr. Weakly makes occasional trips to the Apple Store in a nearby shopping mall, he must do so on his own and without any support from the ICF. ICF staff have instead prohibited Mr. Weakly from leaving on several occasions.
Huh. I wonder, what was Mr. Weakly arrested for, what was he charged with, and what was he convicted of? I agree, these seem like ridiculous questions, but my reason for asking them should be obvious to most anyone reading this. The answer is, he wasn’t arrested for, nor was he charged with, nor was he convicted of, any crime. Yet, essentially, staff of the ICF where he resided, by telling him what he can do and when he can do it, and what he cannot do, treated him exactly as society treats incarcerated criminal defendants.
Ditto for paragraph 35: ICF staff denied Mr. Weakly’s desire to form a romantic attachment. (In fact, at least some incarcerated criminal defendants are allowed conjugal visits, so, actually, they’re one up on Mr. Weakly on that score.)
2. How Federal Law is Intended to Protect the Rights of the Disabled, Including the Intellectually and Developmentally Disabled – Later, the complaint details how federal law is intended to protect the rights of the disabled (all ellipses mine):
76. The ADA [Americans With Disabilities Act] was enacted in 1990 “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities[.]” 42 U.S.C. § 12101(b)(1). . . .
78. Title II of the ADA provides that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.” 42 U.S.C. § 12132. It applies to public entities, including state or local governments and any departments, agencies, or other instrumentalities of state or local governments such as the Defendants identified herein. 42 U.S.C. §§ 12131, 12132. . . .
80. The “integration mandate” of Title II requires Defendants to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 C.F.R. § 35.130(d). This includes services under Medicaid. “The most integrated setting” is one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible.” 28 C.F.R. § Pt. 35, App. B.
81. In Olmstead v. L.C., 527 U.S. 581, 597-600 (1999), the U.S. Supreme Court held that Title II of the ADA prohibits the unjustified institutionalization of individuals with disabilities, and noted that segregation of people with disabilities “perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life,” and “severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, [and] economic independence.” . . .
3. Economics and Math – Later, the complaint details the costs (or perhaps better said, the charges, as there may be a great difference between what something costs and what is charged for it) of housing the Plaintiffs in ICFs:
89. [The Utah Department of] Health provides the majority of ICF services through privately owned and operated institutions. Health oversees the operation of private ICFs by licensing and contracting with these institutions and setting reimbursement rates. 90.Each ICF is reimbursed based on a daily rate. The daily rate, which is calculated by Health, varies between private ICFs and is based on a formula that is impacted by a facility’s fair rental value. For example, Lindon Care and Training Center receives $181.66 a day for each resident in their care while West Side Center receives $186.44 a day for each resident in their care. Although rates may vary between private ICFs, the daily rates are fixed for individuals living in a particular ICF. Lindon Care and Training Center will receive $181.66 per resident, regardless of the individual’s support needs or medical needs. As a result, an individual living in a private ICF does not have a budget that is tailored to their individualized needs.
$186.44 per day cost per ICF resident works out to about $5,593.20 per month and approximately $68,050.60 per year. ICF costs are paid by Utah Medicaid, which is a joint federal-state program. The federal government pays 70% and the state pays 30%. The federal share of 70% works out to $3915.24 per month or $47,635.42 per year. The state share of 30% works out to $1,677.96 per month or $20,415.18 per year
Some of these Intermediate Care Facility (ICF) residents may have intensive medical or other needs which are far greater than the average member of the community (but, keep in mind, those daily, monthly, and annual reimbursement figures I discussed earlier don’t reflect individual needs: they’re simply flat rates). Some, perhaps many, ICF residents may be able to meet their medical and other needs in much the same way that you or I do, with occasional visits to a physician or another provider.
And some members of the community have medical or other needs which are far greater than those of the average ICF resident; yet, still, those community members don’t have their independence, autonomy, and self-determination abridged by the State in the way that ICF residents suffer these indignities, and community members still live in the community despite their intensive medical and other needs. Thus a serious double-standard is in play if the State is going to allow community members with intensive medical and other needs to remain in the community while institutionalizing those with developmental and/or intellectual disabilities indiscriminately.
While my cognitive abilities are (mostly!) unimpaired (I have an advanced [post-bachelor’s] degree) and my overall disability level is comparatively mild, I am developmentally disabled. My ballpark figure for rent and utilities is around $1,300 per month. Throw in another $500 for food (that’s pretty generous, I’d have to eat out most days and/or to buy some pretty expensive groceries to hit that target), and another $200 for fuel or transportation, and the total comes out to around $24,000 per year. I’m between jobs, so I hope to be able to fix that soon, but on my last W-2, I made $27,514. About $28,000 per year, $2,333.33 per month, or about $77.78 per day (though the last figure is somewhat misleading, because, slave to my employer though I am, I do get a few days off each month).
4. Conclusion: The Settlement Seems Like a Win-Win – $24,000 or $27,514 per year versus $68,050 per year? Throw in another $20,000 to the latter annual figure to cover additional expenses, and even at that, freeing the developmentally and intellectually disabled to live in the community, to make their own choices (with the guidance of any of those who care about them and for them, as necessary), and to determine their own destiny and to realize their potential, and the settlement of the case between the parties seems like a win-win. I said as much in response to coverage of the settlement in Salt Lake City’s Deseret News, which can be accessed here (last accessed May 23, 2019):
As someone who has had a close association with the State Rehabilitation Council, which advises Utah’s vocational rehabilitation system; with the Disability Law Center; and with the Protection and Advocacy Council for Individuals With Mental Illness, which is federally mandated to advise the DLC regarding its programs, priorities, policies, and goals as they relate to protecting those with behavioral health conditions (all of these entities having a role in ensuring the self-determination of those with various physical and mental challenges), I say, “Bravo!” to the DLC, to the Department of Human Services, to Utah Medicaid, and to other stakeholders.
I think this really will be a win for all concerned: I’m not convinced that shunting people into intermediate care facilities saves money in all cases (and even if it does, it may be “penny wise and pound foolish”). Even a community-based setting might save money long term, and even if it doesn’t, it seems a small price to pay to preserve self-determination and human dignity. Care-intensive settings may be appropriate for some, perhaps even for many; but they should not be a knee-jerk first option.