9.29.2016

You CAN Choose Where You Want To Live, If You Have Autism

Little House on the Lane
Photo © Serena Snowfield/Flickr. Creative Commons License
[Image: enhanced photo of a cozy cottage behind a flowery garden.]
The San Francisco Autism Society recently published a rather alarmist article on autism and housing issues written by their president, Jill Escher, titled "You Can Choose Where You Want to Live... Unless You Have Autism." Here's a characteristic excerpt:
"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."
Unfortunately, this post is misleading on several points, including waiting lists, policy, and legal jurisdiction. I am worried that, because it presents opinions like "private residences are under attack" as fact, and uses outright fudging like "unlawful methods," it may influence families with limited resources to make housing plans or choices that are not in their family members' best interests.

Here is an attempt to clarify some of the post's factual errors, and and hopefully diffuse some of the panic that readers may be experiencing.

----

Parents like me and Ms. Escher 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 we parents are able to be in their kids’ lives or not.

The official housing 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.

Please know: 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 -- a valid and desired option for many.

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 (California) 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, where my son and I live. Also, there is currently $15 million to help regional center service providers and vendors comply with the newest HBCS regulations.

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. More details: https://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/home-and-community-based-services/downloads/home-and-community-based-setting-requirements.pdf



I realize that Ms. Escher and the people who work with her on housing issues want our children have the best housing options possible when they become adults. But we owe it to those 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.

More California State policy info:
Necessary General Housing Reads:

9.27.2016

Autism and Health Care: Excerpts From My Patients 2.0 Presentation


Video description: Red-headed white woman (me) giving a presentation on
autism and health care at a professional conference.
Periscope video is low resolution and sideways, apologies.

I was honored to be invited to give a presentation on Autism and Health Care at the Patients 2.0 conference this past weekend, as part of the Health 2.0 2016 Conference in Santa Clara. The hosts took a partial Periscope video recording of my presentation, so here 'tis. Please share if you find any part of it helpful.

Transcript

Slide One reads:
Autism and Medical Care: Best Practices
Shannon Des Roches Rosa
Thinking Person’s Guide to Autism
@shannonrosa
www.ThinkingAutismGuide.com
[Periscope video and audio begin after the introduction, in which I talked about being the parent of a high-support autistic teenager, and the fact that the Thinking Person’s Guide to Autism community includes autistic people as well as parents and professionals, and that we are very informed by autistic perspectives]

[Talk begin mid-sentence]

“…that people can’t access the kind of care that they deserve, and that they need, because of lack of understanding of what it means to be an autistic person in a healthcare environment. So even though I’ll be talking about the autistic experience in general, a lot of these things are relevant to health care.”

----

Slide Two reads:
Autistic People: Wired Differently

•What is Neurodiversity?
•Autism as Disability
•Autistic Heterogeneity
•Functioning Labels: Not helpful!
“The most important thing to know about autistic people like my son is that they are wired differently. That is what Neurodiversity means. If you’ve seen Steve Silberman’s book NeuroTribes, if you've read that, it’s basically the history of how autistic people have always been here, and it’s just that we are now able to recognize who they are, the diversity of ways in which autism presents in individuals, and that autism is not a necessarily a disease ... I mean it's NOT a disease.

“That is what neurodiversity means. If you talk to some one like Steve Silberman, he likes to say that it means “not all great minds think alike.”

“And so if autism is not a disease, what is it? Well, it’s a disability. And when you have a disability, what you need to function in the world are accommodations. And unfortunately, because autism is often perceived as a disease, or considered something willful on the part of the autistic person themselves, these accommodations are too infrequently given.

“I know this because with my son personally, I have had a lot of difficult experiences with health case, and I know I'm not alone. I'm not sure how much you already know about autism -- but even though there are various schools of thought about autism as “biological disorder” being caused by "leaky gut" issues or all other kinds of pseudoscience, what is actually true about autism is that autistic people, like anyone else with a condition or a disorder, can have a lot of co-occurring health conditions -- those can accompany autism, but they don’t cause autism. Because autism is neurology, autism is the way your brain is wired.

“And that plays into the concept of autistic heterogeneity, and you’ve probably heard the phrase 'if you’ve met one autistic person, you’ve met one autistic person.' And what that does mean is that while there are a number of common autistic traits, that doesn’t mean all autistic people are going to have them. So you have have somebody who is intellectually gifted but non-speaking, and you can have someone who is developmentally [I meant intellectually] disabled but fully conversational. It really depends on the person.

“That’s why things like functioning labels like “low functioning” autistic person or “high functioning” autistic person are not really helpful. In a health care scenario, if someone is considered “high functioning” then people assume, “oh, what’s their problem? Why can’t they deal with this? Because you’re so high functioning, you can have a conversation, obviously you should have no other problems.” That means their disability is actually ignored.

“Then when you say that somebody is “low functioning,” somebody like my son, well, watch out — because if you think that he doesn’t know what’s going on, then he’s basically going to take you for a ride. He’s completely aware of everything that’s going on around him, even thought he’s technically considered non-speaking and he’s technically considered intellectually disabled. He understands everything that’s going on around him, and God forbid you leave a piece of pizza or mention something that’s going to happen later that you don’t want him to know about — that’s on you.

“So, functioning labels are not helpful.”

----

Slide Three reads:
Consider The Autistic Experience

•Sensory Processing
•Auditory Processing
•Eye Contact
•Echolalia
•Dyspraxia
•Motor Processing
•Meltdowns vs. Tantrums
•“Behaviors”
“So, functioning in general, being in the world in general, but also in a health care scenario, we really have to consider the autistic experience. There are a number of traits that are not necessarily common to every autistic person, but are very common for autistic people in general.

“Those are things like sensory processing. What that means is that we have the five senses: hearing, seeing, touch, all of those things are either under responsive or over responsive. So it can be absolutely excruciating for an autistic person to be in a room that has this kind of echoing sound that we have right here — so they might need to have noise-canceling headphones to be able to function. They might be able to see the fluctuation in a fluorescent light in a way that somebody who’s not autistic would not even notice, and it might make it completely impossible for them to function in something like a medical waiting room, or in a medical office. So if you’re trying to have an exam with someone who comes in for some other medical condition, and they can’t even handle being there, then the option is to provide different kinds of lighting, things like that.

“Auditory processing is another issue; a lot of autistic people have processing delays. This is why a lot of autistic people rely on closed captioning when they watch videos, or when they watch movies, because that allows them to process everything visually, as opposed to processing them visually and auditorily at the same time. And this is another reason why a lot of autistic people prefer to communicate visually, prefer to communicate via text; or it’s nice for kids if you have things like visual schedules to help them understand what you are saying.

“Another thing is eye contact. People are always talking about how “we need to teach autistic kids to make eye contact.” Well, that’s not helpful. A lot of autistic people, because of these processing difficulties, can either give you eye contact or they can pay attention — and you need to choose which one you want. Because it’s not necessary to make eye contact even though it is socially desirable; and for a lot of people it’s not necessary to do for someone to know what’s going on.

“Echolalia is another thing, that means scripting, so a lot of time people may talk to you using pre-prepared phrases like movie quotes, or quotes from books — and anyone who’s every had the movie Caddyshack quoted at them knows non-autistic people do this, too. But a lot of time with autistic people this can be a form of functional communication, so they don’t have to think about stringing all the words together — they can just grab their set phrases, use them, they work, everyone’s happy.

“Another item that’s really important is dyspraxia and apraxia, or motor processing. A lot of times when autistic kids and people don’t speak, that doesn’t necessarily mean they don’t understand. What it can mean is there’s an apraxia, a motor control issue that prevents them from being able to speak. And so in those situations you need to make sure they have correct communication supports, so that they understand what's going on, and they can communicate what’s going on with them correctly.

“This is also why things like Applied Behavioral Analysis can be problematic, because -- and I don't know if you already know what that is -- if you have an actual motor control issue, then you’re not going to be able to respond to commands like “touch nose.” You can hear the person say “touch nose, but you can’t do it. And so that's related to motor processing."

[video ends, but I continued to discuss the topics on the slides not featured in the recording]

----

Slide Four reads:
Autism, Aggression and Self-Injury: Approaches
[Note: This section drew heavily on Dr. Clarissa Kripke's talk Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices]

•Primary Approaches
  °[Ensure an] Autism-Friendly Environment
  °Physical Exam [Medical reasons for "behaviors" are too often overlooked]
  °Exercise [So helpful for some]
  °Communication Support [mandatory for anyone with a communication disability, whether communication needs are intermittent or ongoing]

•Secondary Approaches
  °Medication [fighting stigma, consider autistic tendency towards paradoxical reactions]
----

Slide Five Reads:
References

•Dr. Clarissa Kripke: Director, UCSF Office of Developmental Primary Care: odpc.ucsf.edu
•Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices: www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html
•AASPIRE toolkit: www.AutismAndHealth.org
•Dr. Steven Kapp: Respecting Neurodiversity in Therapy: bit.ly/2cTexhB

9.21.2016

There She Goes

Iz, already bored before her first day of preschool
[image: Blonde pigtailed preschooler sitting on the floor,
yawning, & posing with a Rosie the Riveter lunch box.]
Iz left for college today. An out-of-state college. A perfect-for-her college. But still a college that is Away.

I feel lucky that she's going to a quarter system University, so we got to keep her around longer than a lot of her friend's parents got to keep their own nestlings, but I'm still downhearted.

Those of you who have been reading this blog since the beginning may remember when Seymour and I were dithering over whether or not to follow her Montessori preschool teacher's advice and put her directly into first grade instead of kindergarten. At the time, we followed the teacher's advice because she was the expert and Iz was our first kid. If you find yourself in a similar position, I am telling you now, selfishly, DON'T DO IT. We could have had another year with her. But there's no undoing our decision now, and she's gone.

We spent the last few days running mundane but necessary pre-college errands, which was some decent Quality Time. We had Last Meals at favorite local eateries. We took a Last Family Selfie. It's not like we don't have official closure steps or milestones. But her leaving is still hitting me, hard.

She came upstairs to my bed this morning, before she left at her assigned ungodly hour, and we lolled about with our three cats and snuggled and talked. I think she will be okay. But, Goddess Above, I already miss her.
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