You Can Choose Where You Want to Live... Unless You Have Autism

9/21/2016

Opinion

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...):

Click on the flow chart to find it on CMS' website.

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):
http://www.dhcs.ca.gov/services/ltc/Pages/HCBSStatewideTransitionPlan.aspx
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 jill.escher@gmail.com.

34 Comments

Author

Autism Society San Francisco Bay Area (SFASA) is dedicated to expanding the limited lifespan care options for the dramatically increasing numbers of adults with autism.

The opinions and assertions stated are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism
organization.

Alex Krem link

9/22/2016 08:24:06 am

Thank you, Jill. for a well researched and articulate discussion of this deeply troubling attempt by CMS to abuse its power. The CMS final rule is either ignorant of the needs of our vulnerable population or a cynical attempt to force parents of most I/DD children (who certainly cannot live independently "in the community") to keep them at home without federal and state financial assistance.

The irony of this Final Rule is deep. CMS is prepared to support only those who have the ability to live independently -- the very persons who least need governmental assistance.

We have only ONE WEEK to make our opinions known. Item 2 of your "What you can do" section points to the next step. I would urge people to phone the office of their state senators and assemblypersons too.

The time to rescue California from destructive and misguided federal intervention is NOW.

Concerned Parent

9/22/2016 08:32:58 am

Bingo !!! The new CMS regulations (especially the additional guidance) are an outright attack on the choices of persons with developmental disabilities. CMS favors idealism over realism and the new regs have been meticulously crafted to force integration without regards to individual rights or appropriate needs. The invasion into the area of private housing choices is particularly troubling. Essentially, it implies that DD persons should NOT have a choice to live with other DD persons - as if that choice is inferior to living with neurotypical persons. The additional guidance being issued by CMS violates basic principals of ADA, the Admin Procedures Act and a number of Fair Housing laws. Mark my words - this will end in litigation against CMS.

Rose van Wier Hein

9/22/2016 08:45:11 am

A must read. Do you know what's going right now regarding your special needs young adults choices regarding work, social experiences and housing? Probably not. If you want your young adult with special needs to truly have a person centered plan, one that involves CHOICE then it's time to get involved. Please read and take action, we are all in this together.

David Royko link

9/22/2016 08:47:55 am

The first paragraph sums up the nightmare this is for a huge number of families. Every word thereafter screams, "This situation is a cancer!" It's aggressive and destructive and must be challenged equally aggressively and head on. It has already gone past the desperation stage. Thank you Jill Escher. And please everybody who cares, share on twitter, facebook, at dinner.....

Desiree Kameka link

9/22/2016 08:49:53 am

An autistic individual's #ChoiceFirst should never be shamed, deterred or restricted by government officials. I hope everyone who is a CA residents reads this and submits public comment.

Dadvocate

9/22/2016 09:01:34 am

This is an important and highly disturbing piece. I expect that CMS, a unit of the federal government as big as the Pentagon, and financially and ideologically aligned advocates will respond (if they do respond) with a lawyerly, "disability rights" flavored justification of this social engineering scheme, probably based on a cherry picked misreading of the ADA and Olmstead and citing decades of fuzzy, largely subjective, and conflicted outcome based "research".

But the fact remains that CMS "opted out" of these intrusive restrictions and threat of defunding millions of seniors receiving HCBS support. CMS focused instead on restricting the rights and choices of a targeted population: people with intellectual and developmental disabilities who receive HCBS funding. Restricting one group's reasonable and voluntary choices because they have a disability and allowing others without a disability to exercise those same choices just doesn't seem legal (or defensible) to me.

Bill Choslovsky

9/22/2016 09:14:33 am

Yes, another example of the Disability Industrial Complex in action (or inaction). The road to hell is indeed paved with good intentions.

The irony is this is about . . . "choice," right? If so, then the government -- and self-proclaimed "advocates" and P&A agencies -- should support Medicaid-eligible individuals' choices, whatever they may be.

Think of the irony (or is it hypocrisy): the government will pay for these autistic individuals to live in an ICF (for $60k+), but won't pay for them to live in a "less restrictive" setting of their choosing, like an "intentional community"?!

The only "logical" explanation is it is all cover (masquerading as "policy") in an effort to save money the government does not have. If that's the case, it would be better if all were simply honest about the motivations driving this.

All said, my real beef is less the government and more the "advocates," who claim to represent ALL disabled people, but all too often only support the choice of their making and as expressed by a militant minority. Real choice means embracing those you may not choose for yourself.

Larry Grotte

9/22/2016 10:55:59 am

I rarely respond to blogs but this ONE 'screamed out at me' to comment.
I know the author well and I know she does her homework and 'takes action' when and where it is needed. This article is 'must read' for all members of our community, not just for families like mine with intellectually and developmentally disabled adult children (I/DD),but for ALL of our fellow community members who need to know/or should know that many (not all) of their federal and state representatives are putting out 'ideological platitudes' that conjure up 'motherhood and apple pie' thoughts at first blush. However, upon closer inspection after the 'headlines' become bird cage liners, the various subsequent 'Guidances' and letters from 'officials-on-high' start rolling out from the shadows putting over 303,000+ I/DD individuals in CA seriously at-risk; 'read & heed'.

9/22/2016 11:13:30 am

Well stated - We're experiencing the same problems here in Maryland where a person is allowed to have choices - as long as those choices fit someone else's model. Looking at a long road ahead to get the real changes we need to support individuals with disabilities.

Dan Torisky, President Emeritus, Autism Society of Pittsburgh

9/22/2016 11:40:30 am

Thanks to Jill Escher for her thorough, thoughtful and penetrating analysis of the CMS/HCBS “Final Rule”, and how its provisions manipulate, skirt and blatantly violate both law and reason.

Ms. Escher knocks it right out of the park in describing this Federal diktat’s clear and present threat to many of our most precious freedoms – including the freedom of caregiving families to access appropriate lifespan services, regardless of setting, for their developmentally disabled family members.

Paul Molloy link

9/22/2016 12:32:11 pm

The Federal Fair Housing Act 1988 Amendments include 'handicap' as a protected class. I think it is necessary that local governments and CMS make reasonable accommodation for individuals to live where they want. See US Supreme Court Case: City of Edmonds v. Oxford House, Inc. 514 US 725 [1995].

Jill Escher

9/22/2016 01:02:15 pm

Thanks for all the comments. The blog was so long I didn't have room to insert some important side points. Here are a few:
--A bigger issue is the horrific and immoral waitlist for HCBS services. In some states, 1000s of people and decades long.
--CMS is also unduly narrowing provider-controlled residential options.
--CMS is also threatening day programs under the pretense that autistic/DD clients should obtain competitive employment instead. Nice idea but completely unrealistic for a huge portion of beneficiaries.

Micki Edelsohn link

9/22/2016 04:19:33 pm

Jill,

As usual you have done an amazing job of trying to help all of us understand and make some sense of the CMS regs which are stifling our ability to secure the future for our kids whether you have a child with Autism or IDD. We are your fans on the East coast and are in the same boat! Of course the more you try to unravel this absurd "rule" the more questions I have.

Let's assume that CMS truly believes that by creating these "new community rules" that they are finally giving civil rights to all citizens even those with disabilities who might be "isolated" in an intentional community or farmstead. We have been told in Delaware, you can build whatever you want, but you can't use government money. Am I to interpret that to mean, the government cares about a person who lives in one of these so-called isolating communities ONLY if they use government money? Otherwise they really don't care?

If our foundation, Homes For Life builds an intentional community only families who can afford to private pay for their loved one will be able to live there. Once again leaving out lower income families!!

Delaware has 11,000 adults with Autism and IDD over the age of 21, 3000 have caregivers over the age of 60! Our total population is around 900,000 about the size of San Francisco!

We must all work together to stop this! Our kids are counting on us!
Micki Edelsohn

Gail Womble

10/4/2016 11:13:37 am

What Jill Escher so accurately depicted in her last two blogs is bizarre, frightening, illegal and true. People with autism/dd are experiencing on-the-ground results of national chaos brought about by a sect of idealogues who found a vacuum in these tumultuous times, stepped in, and made their very clear marks. And, of course, the arrival of the ideologues did not displease the federal budget folks. They happily have received the gift of another place to slash.

There is no semblance of reasoning, logic, needs assessment, or practical approach from which CMS could draw the ridiculous conclusions it is inflicting on citizens with intellectual disabilities nationwide. Jill has told us in horrifying detail what the government its doing to our families and loved ones. Irrational behavior and little thought is consuming our Congress and federal government in many areas. Autism/DD is a very concrete example of the harm being done. Do we even have a rule of law now? it feels like we’ve been hurled back to the gunslinging days of the old West.

concerned mom in SF

9/22/2016 07:32:02 pm

THANK YOU Autism Society for addressing this very important issue. We value your organization tremendously and have supported it for many years now, not in the least because of this kind of keen analysis and empowering information that you provide to parents and care providers.

Lisa Jo Elias

9/22/2016 07:34:20 pm

This is a civil rights issue. How can it be right for a group - people with autism or IDD - to be told where they may or may not live?

Susan Houghton

9/22/2016 09:38:19 pm

Bravo Jill for this well-written, well-researched essay.
As many others have noted, this is a basic civil rights issue that needs to be exposed. A variety of residential options MUST be offered AND supported in order to address the tsunami of individuals with DD who will require housing.

Denise Resnik link

9/23/2016 06:36:15 am

Thank you, Jill, for distilling the complexities and shining a bright light on policies that restrict choice when the diverse population of people with autism and other special needs need more housing options and opportunities than ever before.

Amy Lutz

9/23/2016 11:39:59 am

Jill, thank you so much for your extraordinary break down of what is (intentionally, I'm sure) the muddiest, most senseless issue I've ever had the displeasure of being involved with. Our kids need help in overwhelmingly large numbers. Why on earth the government continues to put up these irrational, unjust obstacles completely baffles me.

Aaron Vorell

9/23/2016 12:39:51 pm

Wonderful article Jill!
We all agree people with disabilities should have access to the community and options to avoid isolation. The key issue is it seems CMS, and more directly the people looking to expand on the HCBS Final Rule, are acting as though they believe they have the superior ability to decide what is an isolating environment for adults with disabilities. If they have this supreme insight, superior to the person effected, then we should expect they will use it to "help" other aspects of a persons life.
I would like to ask CMS and those looking to expand the HCBS Final Rule if they believe they have superior insight into what isolates each and every person with disabilities. If the answer is no then lets allow each and every person to make that choice for themselves, with the help of their support system when needed and chosen. #ChoiceFirst

Michael M. Odioso Ohio Coalition for Person Centered Planing

9/23/2016 12:52:13 pm

I completely agree with Jill Escher's opinion. The Centers for Medicare and Medicaid Services (CMS) plans are misguided and un-vetted misapplications of Olmstead that all states should push back against. The CMS plans actually limit choice and eliminate community options. The CMS plans create stifling “red tape” for non-profits and make no Common Sense!

Presumptions of Heightened Scrutiny create the following nonsense: Less choice when it touts more choice, Isolating community settings in cities and suburbs being assumed to be integrating and thereby receiving scant scrutiny, Non-Profits in rural suburbs of major cities losing their funding, Disabled citizens losing residences and services because of the location of their parents/guardian’s residence and farming businesses, typical rural Medicaid recipients receiving Fed CMS funding without scrutiny while their disabled next door neighbors’ funding is threatened by a CMS Plan create to promote their interests and choices.

Oh, by the way, Our Founding Fathers had a lot of common sense when they drafted the Federal Constitution. They knew that central governments and their bureaucracies violate God given liberties over time. Jill Escher and other citizens throughout the United States know that as well!

Sheila Kineke

9/25/2016 10:20:54 am

Hi, Mr. Odioso. I am trying to have some faith that the non-segregationist spirit of Olmstead will mean that the final rule will make lives better for my disabled kids. So please tell me more about how the CMS plans will limit choice and eliminate community options. Some concrete examples would be very helpful. Thanks!

Ashley

9/27/2016 10:43:38 pm

Ms. Mineke: Justice Kennedy noted in his concurring opinion on the Olmstead case, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that states had some incentive, for fear of litigation to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.” It's already so difficult to find affordable housing, and if CMS goes after private residences that people were fortunate enough to find, and if they choose to live there because that's what's most appropriate for them, then that choice should be honored. If CMS has a better option to offer, then that could be considered, but taking away options because they might not agree based on their narrow minded and very subjective perspective should not be allowed. If there is a 50-unit apartment building in an amazing location, where they have access to employment opportunities, social interaction, site amenities and community integration, and residents choose to rent those units with a typical tenant rights, then those units should be recognized as private homes. Instead, the CMS memo suggests that the setting with these units have institutional qualities just based on the profile of tenants with disabilities and that they cannot be recognized as private homes. This is taking away people's choice and community options. If the HCBS final rule is really focused on the outcome of people's experiences, and not on the physical characteristics, why even trigger heightened scrutiny based on the physical characteristics? The HCBS final rule and guidance memos are filled with contradictions.

Laurie Romanowich

9/23/2016 04:31:45 pm

Thank you Jill for exposing the CMS HCBS regulations for the sham that they are. A very misguided effort to rewrite the law, under the contorted guise of "community" (as defined solely by CMS, and contrary to its plain meaning) integration, which btw it fails to accomplish in any event. IMO, wrong on so many legal and policy levels especially as applied to the autism population, where the spectrum is so varied and nuanced.
The sooner the regs are invalidated, the better.
So I have to ask: where have are our national autism organizations been on this? If concerned with protecting all of their constituents, I would expect they should be outraged and be in the forefront of the charge against this deprivation of person centered options and choice.

dersu

9/23/2016 07:51:32 pm

Maybe readers should keep this in mind before voting for statist Democrats.

gary blevins

9/24/2016 12:52:17 pm

I fully agree. The government is attacking people who can't defend themselves. If they can force people with disabilities to live only where the government dictates through convoluted and selective interpretation of laws rules and guidelines, how about anyone else who receives government assistance or even Social Security checks? That would include nursing homes and retirement communities if you used your Social Security checks as partial payment. Who is next? EVERYONE.

Craig Thornsley

9/25/2016 03:58:10 am

YES! NOTHING ABOUT US WITHOUT US applies to ALL kinds of developmental disabilities, not just for those self advocates who can speak on behalf of their own needs and desires like me. Will CMS hold a strike against me if I my own son chooses to live close to me and his friends? What if a rural setting is whats best for him and he wants it?

Will CMS hold testings of all neighbors of every HCBS client to make sure they are certifiably "neuro-typical" whatever that means? And then do they get a document/identity papers to prove such? Should CMS insist on visible labels, maybe stars, on all NON-neuro typicals to insure they don't congregate at any time?

The current direction CMS is trying to push on families with severe DD is discriminatory and outright immoral. So much damage and pain and lost time already perpetrated. The years now of stoppage of housing developments. lost time/more agony for families of adult dd.

Who is their leader? Why isn't she held accountable? I pray Californai will do the right thing and stand up to this evil movement in Washington. Wake UP and tell your leaders this is immoral

Hugo Dwyer link

9/27/2016 09:05:08 am

CMS considers integration to be a value that ranks above safety, stability, comfort, happiness, or a nurturing environment. It is not.

Integration is a goal for some, but not everyone. Many people, disabled or not, do not consider being forced to be part of any particular community is desirable. People want to make their own choices and find their own particular comfort zones. If that means interacting with others not like them, fine. If that means interacting with others just like them, that's fine too.

Intentional communities were not developed as a way to isolate people. They were developed as an alternative system, based on the observed patterns of people's behavior, their needs, their interactions, and their sense of comfort and desire for belonging, for being a part of a greater community. Intentional communities meet the priorities of some, not of everyone.

CMS should have a more expansive view of the population they have been tasked with providing for. They need to abandon their one-size-fits-all perspective and understand that people with disabilities are far more varied and require more alternatives when it comes to housing, treatment, and employment.

Their bureaucratic paternalism is doing no one any good.

Ashley Kim

9/27/2016 11:02:37 pm

We receive calls and emails from so many families that are simply desperate to find supportive housing options for their loved ones. An idea of an affordable apartment lifestyle that could empower their loved ones to live their lives freely and establish meaningful relationships gives them hope.

CMS and any other government (federal and state) agencies threatening that freedom and choice through this unlawful mandate are killing that hope these families desperately need to hold on to.

CMS is going after the legal definition of private residences that people were fortunate enough to find. If people with DD choose to live there because that's what's most appropriate for them, then that choice should be honored without threatening to take away services funding. If CMS has a better option to offer, then that should be considered, but taking away options because they might not agree based on their narrow minded and very subjective perspective without offering any alternative options does NOT make sense. CMS should not dictate how you should live your life. If there is a 50-unit apartment building in an amazing location, where they have access to employment opportunities, social interaction, site amenities, public transportation and community integration, and residents choose to rent those units with a typical tenant rights, then those units should be recognized as private homes. Instead, the CMS memo suggests that the setting with these units have institutional qualities just based on the profile of tenants with disabilities and that they cannot be recognized as private homes. This is taking away people's civil rights. When is this going to stop? If the HCBS final rule is really focused on the outcome of people's experiences, and not on the physical characteristics as stated in their own document, why even trigger heightened scrutiny based on the physical characteristics? The HCBS final rule and guidance memos are filled with contradictions.

Justice Kennedy noted in his concurring opinion on the Olmstead case, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that states had some incentive, for fear of litigation to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

Thanks to CMS, the justice's concern is now the families' nightmare.

Anita Wong

9/28/2016 08:58:37 pm

Thanks for translating the STP into understandable language. CMS seems to be out to punish disabled individuals and those who are inclusive enough to house them as tenants. The effect of 'heightened scrutiny' is less available qualified housing and gives CMS an excuse to deny support to this most vulnerable population

Elisabeth Einaudi

9/28/2016 09:19:19 pm

Thank you for beginning to call out the confusion that is the HCBS ruling and CMS administrative guidelines. This is a critical and pressing issue for all individuals with DD and their families. We need clarity, not subjective measures, regarding services for adults with DD. And the government should be reaching out to support a wide range of housing and support environments for individuals with a wide range of needs.

Shannon Rosa link

9/29/2016 04:31:34 pm

Parents have every right to be concerned about the trickiness of ensuring our autistic kids with the highest support needs get the living arrangements they deserve as adults, whether parents are able to be in their kids’ lives or not.

The official policy guidelines can be overwhelming and dense, and many of us need guidance to understand them. But we owe it to our kids to know what their rights really are — because I worry that people read posts like this and become terrified and lose hope, without exploring or understanding the actual options available.

I also worry because this post is misleading on several points: waiting lists, policy, and legal jurisdiction – and that it may influence families with limited resources to make housing plans or choices that are not in their family members' best interests.

There are *no waiting lists* in California for adults who qualify under the state’s guidelines — autistic people who need significant support in at least three areas of their lives. In other states, there are enrollment caps for people with medicaid waivers, but The Department of Justice recently issued a Statement of Interest that this may violate the Americans with Disabilities Act (ADA), so hopefully this will be addressed in other states soon.

So it’s not because the tools to create great options for adults aren’t there. And of course, it is hard work to research, learn, investigate, plan, and ensure our kids are set up with the lives they both want and deserve. The existing policies (Lanterman etc.) that allow for supported decision making and limit institutional settings mean that we have to spend time exploring and evaluating, and in some cases creating, the right environments with our children.

It’s also important that parents understand the services available for adult children to continue living at home. IHSS and other services are set up so that adult children who need full-time support can live at home, should families choose that option.

The regulations Ms. Escher is concerned about are not meant to abolish group homes: people who rely on public support can still opt for the arrangement that suits them best. Rather, those regulations are to ensure that group homes aren't essentially institutional in nature – to ensure residents have private rather than shared rooms, for example. (This is important for autistic people who are particularly exuberant and/or have sensory sensitivities that make sharing a bedroom a challenge). There are far too many examples of why institutional-like settings put our beloved family members at risk of neglect and abuse.

Housing options for individuals with complex needs in this state are not dwindling. And while we still need to work on getting cost-of-living increases built in, funding has increased enough to take the edge off in many cases: regional centers were recently the beneficiaries of a bill that is increasing funding to all service providers and facilities. New homes are being built. You can see for yourselves the most recent spate of awards -- in the Golden Gate Regional Center region alone. Also, there is currently $15 million to help regional center service providers and vendors comply with the newest HBCS regulations. (http://www.ggrc.org/storage/documents/Budget_and_Finances/RFP_Contract_Awards_FY_2015-16.pdf  )

Also, CMS's jurisdiction over the types of setting where HCBS are used is legitimate as outlined in the statute, and does in fact follow the administrative procedural act – they are not required to go through a separate notice and process comment about enforcing this rule in specific situation. Again, the idea is to ensure that HCBS funds are not used in settings that have "institutional" aspects, in keeping with the new regulations .

I realize that Ms. Escher’s group wants our children have the best housing options possible when they become adults. But we owe it to our loved ones to make sure we use accurate information during the long and crucial process of securing homes that allow our adults-to-be to not merely live, but thrive.

Kathryn

9/30/2016 01:25:23 am

I wrote a long comment and realized I could get my point across more simply.

This is the 21st century, and in America disabled people have rights. People can't just lock their embarrassing relatives in the attic or basement or force them to share their bedroom with strangers they didn't choose to move in with together. Why should CMS reward parents or facility directors for treating Autistic people that way? How many decades has it been since the Olmstead decision? Yet we still have people arguing that the best place for Autistics is hidden from the public and/or forced to live with strangers. I need to see references before I'll believe that an Autistic adult who freely decided they want to live in a rural area has been forced to move to the city. Bonus points if this hypothetical Autistic adult isn't asking for CMS services at the address.

Nothing about us, without us!

Gail Womble link

10/4/2016 11:11:27 am

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You Can Choose Where You Want to Live... Unless You Have Autism

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