by Jill Escher
Almost every autism family I know is panicked about their children's futures. If we parents were immortal, it would be one thing. But we are not. We will inevitably decline into decrepitude and disease, and then die. Our children, who are often extremely intellectually disabled and in need of continuous care, will outgrow our capacity to care for them, and then outlive us by many decades.
It's a terrifying prospect, but when it comes to autism-appropriate residential options, the landscape is not only bleak, it's about to grow bleaker. Adult autism cases are surging — California's, for example, will quadruple to about 100,000 within 20 years (and that includes just the more severe cases) — but former stalwarts of the developmental disability care system, including group homes and care facilities, are all too often closing or slowly being de-funded. For many autistic and developmentally disabled adults deemed "at risk of institutionalization" due to the severity of their limitations, this leaves only one viable alternative: private residences.
But now even private residences are under fierce attack. Using convoluted and unlawful methods, the Centers for Medicare and Medicaid Services (CMS) is seeking to deter the development of private disability-friendly residential projects across the country by threatening to label them as "noncompliant" with vague Medicaid rules. Rules, I might add, that CMS lacked the authority to enact in the first place.
This is a big deal. For autism/DD families everywhere. Because CMS' Home and Community Based Services (HCBS) program is the primary source of government funds for long-term supports, such as all-important aides, for adults with autism or developmental disabilities who cannot care for themselves. If you read my previous blog, “The Federal Government’s Quiet War Against Adults with Autism,” you learned generally about efforts by CMS to reduce HCBS Medicaid funding for this dependent population. In this blog today, I'll focus on just one problematic aspect of new HCBS rules, this effort to curtail private housing options.
AN UNPRECEDENTED INTRUSION INTO PRIVATE HOMES
Residences controlled by Medicaid service providers like group homes have always needed to pass various CMS tests. But now the agency is undertaking a vast expanse of regulatory reach into private residences owned or leased by the disabled persons, such as homes, apartments, condos, townhomes, mobile homes, houseboats, yurts, farms, ranches, tiny homes… every private place an autistic/DD adult might reside of their own volition. Based on ostensible new CMS rules, after property-based investigations, private homes deemed to be "noncompliant" will be ineligible for residents to receive HCBS.
In a nutshell, noncompliance means CMS or the state Medicaid authority has found a private residence has "the effect of isolating" beneficiaries from the greater community and therefore is legally considered to have "the qualities of an institution." (See the regs, especially 42 CFR sec 441.301(c)(5)(v).) If the residence does not become “compliant” following an order from CMS or the state, current and future residents are ineligible for HCBS benefits. It's functionally equivalent to a licensing scheme for private residences.
Good luck finding details about this new de facto licensing protocol in the HCBS regulations themselves. It was hinted at in a 2014 regulation, with details slung about in subsequent informal bulletins, letters, and oral statements from the agency. Lawmaking is not supposed to work like that. But hey, if CMS had been upfront and said, “Here’s our new autism/DD private residence licensing requirement,” the ensuing uproar would have crushed the proposal, as CMS lacks authority to regulate private residences. But when you create policy by stealth, smoke and mirrors, closed-door-crafted guidances, and a heap of vague lingo and euphemism, maybe no one will really notice.
Well, we noticed. And we've also noticed that CMS has slyly articulated not one but two enforcement mechanisms regarding property "compliance." The first mechanism is an inquiry that takes place at the level of each individual HCBS beneficiary. CMS rules require that an autistic/DD client's person-centered plan (PCP) be created and monitored to ensure the individual has access to the community as appropriate, is not isolated, is free from coercion and restraint, and has the services appropriate for him or her. Yes, I think we all want our autistic/DD beneficiaries included in the community to the extent desired and appropriate. And let's hope our state developmental services system can put these goals into effect through PCPs offering necessary supports, transportation, and programs no matter what style of residence a client may choose.
The second property-based enforcement mechanism is the more problematic one because it occurs at the level of the private property itself. Notwithstanding any particular beneficiary's desires or circumstances or plans, CMS says states are prohibited from providing HCBS benefits to autistic/DD beneficiaries in private residences deemed in the abstract to be noncompliant. If you don't believe me, just read the notorious November 2015 letter from CMS to the state of California underscoring CMS' intent to deploy a private residence authorization scheme. It said: "If the state is operating with a presumption that an individual’s private home or private family home is [compliant], the state needs to confirm that none of these settings were purchased or established in a manner that isolates the individual from the community of individuals not receiving Medicaid funded home and community- based services." And then CMS provides two examples of private residences it apparently has on its radar. (By the way, read Autism Society San Francisco Bay Area's February 2016 response here calling out the multiple very serious errors in the letter; seven months later and despite numerous pleas, it has yet to receive a response from CMS.)
In case you are interested, here is CMS' schematic showing how it will employ this second enforcement mechanism (it's crystal clear...):
AN ANALOGY: FOOD STAMPS CONTINGENT ON HOME INSPECTIONS
Let me explain how totally weird this is via an analogy. The federal government helps fund the food stamp program which serves millions of low-income individuals. Let’s say the USDA conditioned eligibility for food stamps on inspections of all private homes in which beneficiaries live to certify that the homes create a “setting” conducive to good nutrition. If a private home was deemed noncompliant (I don’t know… too small a fridge, too large a sink, too old an oven…) the landlord would receive a “remediation” order or the low-income resident would be denied food stamps. If the home were deemed compliant, however, the landlord gets his gold star from the USDA and hungry and poor resident would get his or her stamps, phew.
Allow me to suggest that such an intrusion into private homes—such an overreach of authority by the USDA—would be met with widespread derision plus a flurry of court orders knocking down the home-licensing program. Sure, the USDA could take reasonable steps to ensure food stamps were being expended on healthy, nutritious foods. I suppose the USDA could even conduct audits on individual recipients to ensure they were spending public funds on fruits and vegetables instead of Ben and Jerry’s. But Congress never granted the USDA authority to inspect private residences to essentially license them to create two categories of stamp-worthiness: nutrition compliant homes and nutrition noncompliant homes. It’s simply outside USDA’s jurisdiction.
This bizarre scenario, however, is what’s happening today with HCBS for autistic/DD adults. HCBS does not pay for housing itself, just a portion of services. It’s like food stamps for DD support services. But all of a sudden CMS seems to think it is allowed to order states to conduct sweeping, systemwide inspections of private residences for what is essentially stamp-worthiness. This is unprecedented and without legal basis. Since I'm one of those private residence landlords, let me offer some perspective.
HCBS LACKS JURISDICTION OVER JOE SCHMOE PRIVATE RESIDENCES
I am not a service provider, but I am most certainly a private residential landlord to adults with autism and developmental disabilities. My tenants, who live in private multiplexes, have leases, and I, being a mere landlord, am a “Joe Schmoe” from an HCBS point of view. Like other non-provider landlords, I have zero relationship with HCBS, do not provide HCBS services, and do not control tenants' HCBS supports.
But under this new licensing scheme, CMS has announced that all Joe Schmoe private residences like mine where autistic/DD HCBS beneficiaries reside must be deemed either “compliant” or "noncompliant" with the new HCBS rules. Neither CMS nor the state Medicaid authority has ever had jurisdiction over me or my property, but now however, CMS would like me to believe we private residence providers are subject to extensive government investigations to determine our “compliance” with federal rules that have nothing to do with us. All this just because we rent to Medicaid-served adults with autism/DD. It's like the USDA conducting inspections of my property's kitchens and ordering various changes simply because some of my tenants receive food stamps.
HEIGHTENED SCRUTINY: AN ILLEGAL PROCEDURE TO INSTILL DOUBT AND UNCERTAINTY
But the unauthorized investigation of my property and business practices to see if they "have the effect of isolating" is just the start. Then it gets worse. CMS itself has then retained discretion to determine "through heightened scrutiny, based on information presented by the State or other parties," whether a private residence has this effect. CMS can essentially, for almost any reason, stamp my property as "too isolating" (um, even though my property has zippo to do with my tenants' HCBS-funded supports, which are the actual thing that determine their daily lives). The process for this "heightened scrutiny" does not appear in the regulations. It seems an infinite ocean of both procedural and substantive administrative discretion.
First, let me share some good news—some states are pretty much calling CMS' bluff. In their state HCBS transition plans, they are telling the agency they will presume private residences to be compliant, rendering residents presumptively eligible for benefits. But even though that's definitely a good (and the only legal) way to go, CMS is still holding the heightened scrutiny card.
So we must ask, since nothing appears in the regulations, how will CMS undertake heightened scrutiny of a Joe Schmoe private property? A non-regulatory, optional CMS information document suggests these elements, among others, to determine the "effect of isolating": "Is the setting in the community among other private residences and retail businesses?" I guess suburban and rural homes are in trouble. "Is the community traffic pattern consistent around the setting (e.g., individuals do not cross the street when passing to avoid the setting)?" Um, really, how random pedestrians cross the street is relevant? "Do individuals on the street greet/acknowledge individuals receiving services when they encounter them?" Uh, the friendliness of strangers passing by is relevant? Really? And "Is there evidence that visitors have been present at regular frequencies?" What, are we going to take fingerprints and DNA samples?
But more worrisome than these hyper-nitpicky and fairly absurd questions have been CMS' unofficial statements that properties with too many people with developmental disabilities (the "DD quota"), or that feature onsite amenities, or that look too disability-friendly could be considered "isolating." It's statements like those that are scaring the bejeezus out of families, individuals, developers, and investors who desperately want to create more housing opportunities in our communities. CMS appears to be casting the net so broadly that almost any private residence with intentionally disability-friendly elements could be considered to "have the effect of isolating."
But that's exactly the point. Heightened scrutiny, you see, is a bureaucratic trump card of ambiguity, uncertainty, doubt and fear. With it, CMS can deem a private residence noncompliant for almost any reason, and therefore deny benefits to the disabled residents.
A SNAKE PIT OF LEGAL WOE
Okay, class, let's review some of the legal problems with the HCBS private residence scheme.
Zero Authority. First, CMS simply lacks legal authority to regulate private residential property. CMS provides subsidies to states to help them provide services and supports for some of their residents with disabilities. While the states, following CMS rules, may regulate the providers of the services (including group homes, for example), CMS lacks jurisdiction over private residences. This new HCBS mandate is a novel sideways attempt to regulate these homes.
Lack of Due Process. Second, assuming for the sake of argument that CMS actually had jurisdiction to impose this scheme, how, exactly, will it work, and where is the due process for beneficiaries and all us Joe Schmoe landlords? We are only told that CMS “presumes” that some properties have “qualities of an institution” because they “have the effect of isolating” the HCBS beneficiaries. What is the legal standard for this judgment? How does CMS obtain its property information? Does it require Schmoe landlords to respond to questioning or form letters? Will the state conduct onsite assessments on our Schmoe properties? If so, how? As a guest of the disabled tenant? Based on a warrant from a court? If so, why would a court possibly issue such a warrant? Probable cause that the landlord violated an HCBS requirement? But it's not legally possible for private landlords like me to violate any HCBS rule. So I'm stumped.
The regulations also empower unspecified “other parties” to provide information to the state and CMS about the supposed “institutional qualities” of Schmoe private residences. How would that work? Does Joe landlord need to be copied on these complaints? Must the state let Joe know about these complaints? What about all the residents of the property? Are they told? How can they respond? Further, if I were to receive a “remediation” request, what could that entail? Evicting some percentage of the disabled tenants to meet some fuzzy CMS integration preference? Eliminating privately provided aspects of the property CMS deems too disability-friendly? And what's the appeal process if the state cuts off funding? Or if CMS, through heightened scrutiny, deems a home too isolating? If a beneficiary or landlord wins an appeal (assuming there's even an avenue for appeal... remember, we're currently on the island of no due process), can they at least be awarded attorneys' fees? I submit none of these due process procedures appear in the regs because, of course, CMS and state Medicaid authorities are not legally authorized to conduct these de facto licensing procedures in the first place.
Boundless Administrative Discretion. As I wrote above, also assuming for the sake of argument that CMS has jurisdiction to engage in this de facto licensing scheme, the process entails almost unlimited discretion to deem a private residence "isolating" and therefore noncompliant. Rules must not only have a rational basis, but agency action to enforce those rules must adhere to legal regulatory standards—boundless discretion based on a moving-target wildly expansive definition of "isolating" is not a legal way to conduct administrative duties.
Violation of the APA. Which brings me to the fourth legal problem. CMS is attempting to unlawfully skirt the federal Administrative Procedures Act by bypassing the notice and comment requirements of regulatory practice in favor of informal pronouncements through non-regulatory informational bulletins (such as the one about the random passersby waving to property residents), letters, and conference statements. The private residence mandate is contained in scattered materials and not on the face of the regulation itself. Any generally applicable rule that substantially affects rights or expectations of the public must go through a notice and comment process. CMS utterly failed to do that.
Conflicts with federal, state and local laws. Fifth, the mandate conflicts with other laws. The ADA, for example, requires landlords like me to provide reasonable accommodations to disabled tenants. CMS is threatening that we should not provide disability-friendly accommodations, lest that be seen as an amenity that could reduce community participation. Fair housing and federal and state anti-discrimination laws prohibit me from discriminating against developmentally disabled renters, yet CMS is quietly announcing what amounts to a DD quota system. CMS is even trying to trump ordinances that govern private residences. For example, some municipalities, states, and even HUD programs require 100% developmental disability occupancy as a condition of some subsidies. CMS’ licensing scheme would render those rules – intended to create more desperately needed DD housing— ineffective.
Unlawful P&A Witch Hunt. Sixth, CMS has orally stated it plans to charge our Protection & Advocacy (P&A) agencies with independent investigatory powers over private residences to determine compliance, and that this could result in removing HCBS supports for autism/DD adults residing in their own preferred private homes. If you know anything about P&A agencies, you should be horrified. The federal Developmental Disabilities Act empowers P&As to investigate abuse complaints lodged by DD individuals; these agencies are not authorized to pursue administrative claims against the DD individual and against his or her will. This is a noxious “witch hunt” idea without basis in any law.
THE "NEW INSTITUTIONALIZATION"
The bottom line is this: CMS is using the fuzzy specter of de-funding autistic/DD tenants through its de facto licensing mandate and heightened scrutiny process to frighten property owners away from renting to DD adults, and to scare developers away from creating new living opportunities for them. Is the motivation budgetary? Is it ideological? It doesn't matter, because either way it's a disaster for the autism/DD community.
These are not tickets to Hamilton, an Alaska cruise, or an F-35 fighter jet. We are talking about wanton deprivation of essential life supports for our most vulnerable and disabled citizens. We are talking here about a basic, basic, basic government function. But that seems to not matter in this new institutionalization where adults with autism/DD are stripped of the options routinely available to nondisabled people via arbitrary administrative fiat.
WHAT YOU CAN DO
(1) If your state is undergoing public comment for its HCBS transition plans, please submit comments:
- There is a dire need to expand residential and nonresidential capacity to serve the burgeoning numbers of adults with autism and DD.
- We must minimize bureaucratic hurdles and foster the creation of many different types of projects and programs to meet a wide variety of needs.
- For housing, we must expand both provider-controlled and privately-controlled residential options.
- For private residential options, CMS has no authority to conduct systemwide inspections of private residences or impose heightened scrutiny on those homes.
- Any review of the quality of a beneficiary's plan, and any examination of undue restraints via HCBS services, must occur through the individual's person-centered plan, not at the level of an unauthorized private property review.
- A beneficiary and landlord whose private residential property is deemed "noncompliant" in any way must be accorded the full protections of due process, and the procedures for due process and appeal must be spelled out in legally valid regulations following required notice and comment.
(2) In California, you can provide public input here no later than September 29, 2016 (click on the STP public input template):
There is also a conference call on September 27, 2016 3-5pm PST. Details will be posted on that website.
(3) Tell your federal representatives about this crisis created by CMS and ask that they consider a congressional hearing about this issue, or an outright amendment of the law.
(4) Visit the Coalition for Community Choice to learn more about HCBS: http://coalitionforcommunitychoice.org/ccc-materials/
Jill Escher is an autism research philanthropist with the Escher Fund for Autism, president of Autism Society San Francisco Bay Area, a property investor who rents to adults with and without disabilities, a former lawyer, and the mother of two children with severe, nonverbal forms of autism. You can reach her at firstname.lastname@example.org.