by Jill Escher

UC Davis recently published a noteworthy study examining one aspect of the financial burden posed by autism spectrum disorders in California. That aspect was average annual expenditures made by the Department of Developmental Services (DDS) on clients with autism, and the researchers examined those by age, gender and ethnicity as well. The study was limited to non-medical costs, including DDS-funded Day Programs, Out-of-Home, Support Services, Miscellaneous Services, Transportation, In-Home Respite, Supported Employment, Health Care, Work Activity Program and Out-of-Home Respite. The study was based on fiscal year 2013 data and more than 42,000 DDS clients with ASD.

The study found, among other things:

• DDS spending on autism cases increases dramatically with age. (No surprise since school districts cover the bulk of costs for those 21 and under).
• People age 18 and over receive approximately two and one-half times more funding as younger people with ASD, with the widest gap between the youngest and oldest age groups. (No surprise since older adults with ASD are unlikely to live with their parents).
• Average spending for each DDS client aged 3 to 6 was about $12,000, while average spending on each adult with ASD aged 65 and over was close to $50,000. (Spending on young children has probably decreased since the date of this data due to shifting of ABA/early intervention costs to insurers.)
• White clients receive more DDS funding than Hispanic, African American, Asian and other clients. Compared to whites over the age of 18, average per-person expenditures were nearly $13,000 lower for Hispanics, $8,000 lower for Asians, $6,000 lower for others, and $4,000 lower for African Americans. (Seems regrettably consistent with some other research findings.)

The study noted that the surging numbers of DDS autism clients meant that expenditures are likely to surge as well, as ever-growing populations age out of the school system and into the DDS adult system.  The authors wisely called recognition of this trend an "urgent imperative."

While the study did shine a needed light on some of the economic burden created by ASD, it had one major shortcoming: it grossly undercounted actual out-of-pocket costs for autism, both from the taxpayers and families. The authors did acknowledge this limitation in the study itself, but the public communications about the study seemed to skirt this issue.

In California, DDS is the "payor of last resort" and ASD adults must first exhaust funding from other “generic” sources before tapping into regional center funding. This means the study ignored the vast majority of adult autism-related expenses, including:

• SSI (usually about $12,000 per year)
• In Home Support Services (county funds, about $24,000 per year for those with substantial functional limitations)
• Subsidized rents, in the form of low-income housing vouchers or set-aside low-income units (usually about $24,000 a year in the Bay Area)
• Medi-Cal and other insurance (for items like behavior supports, could be several thousand per year, at least)
  
• Paratransit and other subsidized and specialized transportation (can easily exceed $10,000 per year for daily transportation to and from programs and activities, very few of the DDS autism clients can drive)
  
• Private expenditures, such as parents, special needs trusts, and nonprofit fundraising (often in the tens of thousands per year).
  

Taken together, annual expenses for an an individual with ASD vastly outstrips what the authors characterized in their study. Nevertheless, their work is a very important start to this increasingly urgent public conversation. I now encourage them to undertake a “Phase 2” of this project examining the true scope of adult autism-related costs. As lead author Paul Leigh, PhD, said: "Our findings can help stakeholders, including legislators and health insurance administrators, accurately estimate the costs of autism services and plan their budgets to meet the lifelong need for those services.” Agreed, but now let’s move toward a more realistic picture.


Reference:  J. Paul Leigh, Scott D. Grosse, Diana Cassady, Joy Melnikow, Irva Hertz-Picciotto. Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories. PLOS ONE, 2016; 11 (3): e0151970 DOI: 10.1371/journal.pone.0151970

By Katherine Osnos Sanford

[Editor's note: As Autism Awareness Month draws to a close, and with it its usual skew toward sugar-coating and euphemism, we bring you this sober reflection on autism parenthood by Bay Area autism mom Katherine Osnos Sanford. You can find her at katherinesanford.com.]

1 in 5 Americans has a tattoo
1 in 6 has light eyes
1 in 13 has food allergies
1 in 30 has red hair and freckles
1 in 50 has an artificial limb
1 in 68 has Autism

My daughter is 1 in 68. The CDC recently released numbers saying that 1 in 68 children are Autistic. Each one of those children has two parents who also carry that diagnosis with them, always. Does that make me 1 in 34? I think it does.

In every house, in every child, in every family, Autism looks different. But if you are a parent of a child on the spectrum, no matter where they fall, there is some common ground. I know you when I see you; we walk the same path lined with eggshells, and potholes, but it’s ours.

Below is a list that anyone in the 1 in 34 club will recognize. You are probably a member of the club if at least a few of the below ring true:

• If you have ever wondered whether your child will have a friend.
• If your child has never told you about their day.
• If you know what “stimming” means.
• If you know what two or more of these stand for: IEP, PPT, SPD, OT, SLP, ABA, BCBA, EEG, GF, CF.
• If you know what “scripting” means.
• If you wake up at least once a week and wonder who will take care of your child after you die.
• If you have ever spent an entire meeting talking about eye contact.
• If you look at a package of diapers and wonder what happens after your kid gets to 50 lbs.
• If you know what “fecal smearing” is.
• If your first thought when invited to a family gathering or neighborhood barbeque is how you can graciously decline.
• If an advertisement for a parade or fair, makes you think, “that sounds loud.”
• If going to a restaurant or a movie as a family isn’t something you do for fun, ever.
• If when you enter a room, your first thought is, “what will my child climb on in here?”
• If the question “how old is she?” makes you uncomfortable.
• If you count your money in hours of therapy instead of years of retirement.
• If the sight of a 16 year old flapping his hands and bouncing on line at the grocery store makes you smile and cry at the same time.
• If you know that milestones have nothing to do with age.
• If you know that there is nothing better than an ordinary day.
• If anyone has ever said to you “I don’t know how you do it…”
• If you never wonder what you are made of.

If you know how any of the above feel than you are a member of the 1 in 34 club. It seems to get less exclusive every year. There is no secret handshake, or tennis whites. No one wants to join this club, and once in, you are a member for life.

I look at my daughter and she has taught me so much — a whole new language, even though she doesn’t speak.  She is fierce, and bright, and beautiful.  She is unconcerned about social pressure and will never wonder if her outfit makes her look fat. She is completely clear about what she likes, and is uncompromising in her pursuit of it.

On her behalf, I have become someone I never thought I would be.  I am difficult. I ask too many questions.  I disagree with people even when they are doctors. I have cried in public. And most importantly, I have learned that you don’t love someone for who you thought they would be, or for what their future may hold.  You love them because they are yours, because even if they are 1 in 68, to you they are 1 of 1 and you cannot imagine your life without them.


Copyright 2016 Katherine Osnos Sanford

by Jill Escher

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)

Figure 1: According to a recent CMS report, Medicaid spending on these waiver programs totaled $41.1 billion in 2013, up from about $5 billion in 1995. Waiver programs targeting people with developmental disabilities accounted for 72 percent the 2013 spending.

Figure 2: Slide from Nancy Thaler’s presentation explaining the CMS shift away from out-of-home disability-specific placements.

The Arrows in CMS’s Quiver

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.

LEARN MORE ABOUT THE NEW HCBS RULES:

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
[email protected]dds.ca.gov

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.
http://coalitionforcommunitychoice.org/

The Atlantic: Who Decides Where Adults with Autism Live?
http://www.theatlantic.com/health/archive/2015/05/who-decides-where-autistic-adults-live/393455/

"Before I'm Gone" asks where will San Franciscans with Developmental Disabilities live?

Learn more at http://www.pandh-sf.org/

[Editor's note: This is a short essay by a local 9 year-old girl won a contest put on by Scholastic. It's about her big brother, Tim, who has autism. She Says her mom, "A big part of why she is the strong and caring girl that she is today is because of her experiences related to Tim."]

By Callia Kanaaneh (Age 9)

I’m Callia Kanaaneh and you can say my name however you want to pronounce it. My brother’s name is Tim short for Hatim. He has something called Autism. Autism is something that makes it so he doesn’t think like you or me. He doesn’t talk like you or me. And I still love him, and nothing can change that.

A 9-year-girl like me might not want to flaunt something like this but I can’t keep my brother locked up so no one knows about him. I want him to SHINE BRIGHTLY! If you have a problem with that, then you try to take my place in the world! All I want is to have the best for my big brother. I mean, he is twelve, and sooner or later he will grow up and I can’t change that.

People treat me differently than others. Some treat me as if my brother is not so different from them. Those people are my true friends or just nice people. I’ve made friends and foes because of my brother. Some of the people I know have never seen my brother.

I’m flaunting this specific thing because I love my brother. I can’t keep him a secret like he doesn’t exist! I want to make a big shout out to my family: Mommy, Daddy, my 3-year-old sister, Zara, and Tim. Family, I love you.