As our society grapples with the dramatic surge of young adults disabled by autism aging out of school and into the vastly less supported real world, one would think every effort was being undertaken to expand programs and housing to address their serious and lifelong support needs.
But as it turns out, precisely the opposite appears to be happening. And it stems from a quite intentional new federal policy. Even though the number-one concern of autism families is the availability of long-term care for their disabled adult children, few people seem to know about seismic shifts in the federal approach to funding that are poised to sharply restrict options.
What is happening here? And why don't you know about it?
Adult autism services are in large part funded by the federal Medicaid Home and Community Based Services (“HCBS”) program, also known as the HCBS waiver. This waiver is specifically directed at providing matching funds to states for support services to adults who require an “institutional level of care” to survive, but who prefer to live in the community rather than in institutions.
But as HCBS expenditures have skyrocketed (see figure 1), the federal Centers for Medicare and Medicaid Services (“CMS”), the agency that administers the program, looked for a way to cap spending by revising funding eligibility rules. (The new rules can be found at 42 CFR Part 430 et seq.) From what I can tell, and based on a flurry of official statements issued after the publication of the regulations, the primary goal of new rules is to put the brakes on the creation of new residences and programs that cater specifically to adults with autism and other intellectual and developmental disabilities (“I/DD”).
Why? Because when these individuals move out on their own, away from parents and families as primary caregivers, costs go up, sometimes a lot. Because of their severe functional limitations and often challenging behaviors, many of these adults require 24/7 care, often with high staffing ratios, including, not infrequently, 1:1. The bill can be steep, and CMS is tired of paying.
Former CMS staffer Nancy Thaler, one of the architects of the new regulations, has explained the strategy quite bluntly (see this presentation for example, https://www.youtube.com/watch?v=-Q6SL9MoiPk), saying that to achieve financial sustainability in this era of “demographic global warming,” she envisions a system emphasizing supports for the families, and creating a system of adult foster care exempt from the typical and costly employment and tax laws, instead of out-of-home placements such as group homes or disability-supportive communities. Close relationships, she observes, are cheaper than 24-hour paid supports, and will “nudge the system toward sustainability.” (See figure 2)
Now, CMS did not want to come out and say, “We’re putting the kibosh on adult autism and I/DD housing and programs, it’s just too costly to provide the services” — that probably would not have gone over so well — so the administrative rules instead attack placements in a circuitous fashion unclear on the surface of the actual regulations. That's a big reason you don't know about it.
The rules, as extended and intensified by a flurry of CMS subregulatory “guidance” documents, label disability housing and programs as presumptively “institutional” or at least possessing “institutional qualities.” By coming under the institutional umbrella, group settings are then subject to a clandestine “heightened scrutiny” process wherein CMS retains what appears to be unbridled discretion to deny services funding. Also, in an unusual scorched-earth tactic to contain expenditures, the rules empower community snitches (in reality, those appear to be primarily federally funded advocacy groups) to inform CMS of programs or housing around the country they consider too congregate or disability-specific in nature.
Because CMS has found a way to de-fund services to nearly anything that smacks of “disability-ish” structure or design, or that is considered too “congregate” or “clustered,” it can more effectively control how much it forks over to states each year.
The Attack on Autism Housing Has Begun
The results so far appear to be exactly what CMS desires: nonprofits, housing providers and parents, spooked by this new HCBS neck-chop, are increasingly reluctant to invest in housing or expand program capacity to serve adults with autism or I/DD.
Please understand that CMS is not paying for actual housing, the agency pays only a portion of the services component. With the demise of state institutions and other state-funded options, the burden has squarely shifted to families and nonprofits to create community-based residential places in which often catastrophically disabled loved ones can safely live. But now the federal government is holding a giant “STOP” sign to private partners hoping spending their own money by threatening to remove a subsidy for long-term care services.
How bad is the fear factor? Let me cite a few examples from California — a state that has not yet even submitted its state HCBS plan to CMS, and which has not even made any statements about restricting housing options. Last week, the new director of the Department of Developmental Services suggested to a private nonprofit housing developer (who receives no HCBS funding, but is simply a landlord) that she not rent to more than 25% people with developmental disabilities, lest her disabled tenants’ services funding be in jeopardy. Some Bay Area friends trying to create a small residential community for severely intellectually disabled adults were warned they might not get funding if their property had disability-friendly amenities such as a fence, or, gasp, wheelchair paths. Never mind that some residents are prone to elopement, and others are non ambulatory. And in an egregious letter to the state of California, a CMS official labeled a small and community-integrated Bay Area autism housing project—one where residents spend their days immersed in the community—as isolating, therefore intimating its disabled residents might not be presumed eligible for HCBS funding. And it's even worse in other states.
In California, the number of adults with seriously disabling autism is poised to quadruple in the next 20 years. Where will they live? Who will care for them? As cherished adult programs and housing options shrink and new ones become too burdened by CMS prohibitions to get off the drawing board, we are clearly moving in the direction of slamming doors instead of answering these urgent social services questions.
Disability Discrimination Embedded in Law
One of the most troubling aspects of the new CMS rules its necessary tool of overt disability discrimination. In an unprecedented move, the government is defining where a minority (here, people with developmental disabilities) can live before they can get needed social services, and promoting the idea of maximum quotas of units available to people with developmental disabilities, even in private residences. How would a senior citizen feel if told he could not receive public assistance if the government felt he lived with too many other elderly people? Should we shut off low-income housing vouchers to African Americans if more than 25% of a property is rented to people of color? Are people with Alzheimer's being told they cannot live with "too many" other people with the condition? On top of the bureaucratic shenanigans, we are also talking about rank discrimination.
Though the rules talk of of “person-centered” and “outcome-oriented” services, where individuals are not “isolated” and are free from coercion and restraint, in Orwellian doublespeak fashion, civil rights and liberation is not the true endgame here. The overwhelming goal is to restrict out-of-home options.
In practice the rules mean if you’re sitting at your parents’ home doing nothing, or in your own apartment without on-site staff, that’s “community integration.” Meanwhile if you prefer a well staffed adult autism program or housing complex, where you are cared for and safe, engaged in the community, and in the company of your friends who may have similar disabilities, your choice is ironically deemed “isolating” by bureaucrats. And therefore subject to the CMS axe.
We Need an Efficient System, but a Realistic One
As a fairly conservative person, particularly in the realm of public finances, I am grandly sympathetic to CMS’ dilemma and the goal of containing costs for social services. Clearly, supporting parents and families, encouraging employment, and offering integrated community activities must be part of the answer when those things are feasible.
But the problem is these elements fail to address the reality of those most desperately in need of HCBS funds. I truly wish that CMS was factual in hyping the incredible potential for our grown mentally disabled kids to achieve functional independence and competitive employment with minimal support. But a foster family is unlikely to take in a 200-pound man who shreds the furniture and throws tantrums. A nonverbal woman with an IQ of 40 is unlikely to find competitive employment. A man who repeats train schedules out loud and can’t attend to his own hygiene is unlikely to make friends in the community.
To address the wide diversity of needs, particularly for those with severe impairments, we must foster a strong network of specialized programs and residences designed and staffed to address the unique and often intensive needs. This does not mean forcible isolation as in the bad old days of institutions, but rather the opposite: suitably supportive options where high-needs adults are welcomed, understood, and safe, and a home base from which they can access the community. These programs will prevent psychiatric inpatient holds, emergency room visits due to aggressive outbursts, long-term hospitalizations, incarceration, crisis care placement, and nursing-home type facilities. All of those band-aids cost orders of magnitude more than day programs or supported residential placements.
Most importantly, all autism parents will lose capacity and die, and the vast majority of our adult disabled children will outlive us by many decades. Creating a network of adult autism-friendly options is an inevitable imperative, as much as CMS staffers may prefer to dig their heads in the sand.
There is some good news here: states retain a good amount of latitude in how they will implement the new regs. Some states will be more accepting of congregate solutions than others. It's my hope, and the hope of countless other autism families and advocates, that California allow the broadest possible range of choices for its autistic and developmentally disabled residents. Please learn more in the sidebar below. I encourage autism families to become familiar with the issues and to fight not only for their children's right to choose, but for an overall system guided by both efficiency and realism.
April 29, 2016: DDS HCBS Task Force Meeting, Sacramento
Department of Developmental Services Home and Community-Based Services Advisory Group. Members of the public are welcome to attend.
Time: 10:00 am to 3:00 pm
Place: Department of Rehabilitation
721 Capitol Mall
Sacramento, CA 95814
Conference Room 242
A call-in line and meeting materials will be made available closer to the meeting date. All visitors are required to sign in at the guard station; please indicate whether you will attend in-person or via telephone.
For more information: Betsi Howard (916) 653-7710
May 20, 2016: Forum on HCBS in California (livestreamed)
Autism Society San Francisco Bay Area (SFASA) will be sponsoring a Forum on HCBS Rules in California. This event will feature officials and service providers speaking about the current status of federal funding for adults with autism in our state, and to maximize public access, it will be livestreamed for free (seating at the event is limited). The main purpose is to provide clarity about the rules as they apply in California so that families, programs and nonprofits serving the developmentally disabled can take steps to expand autism-friendly community-based offerings without undue fear of running afoul of federal guidelines when they go into effect in a few years.
Details about the event will be posted in April at the SFASA homepage sfautismsociety.org.
HCBS in California: Myths v Facts
This handout produced by SFASA separates myths and facts surrounding HCBS rules (pdf).
Coalition for Community Choice
An advocacy organization favoring a full array of options for adults with developmental disabilities.
The Atlantic: Who Decides Where Adults with Autism Live?