hgh dhea metformin


June 2024



Recent Posts


new flowers
Dear friends, This has been a difficult month for many of our community members. We began the month with the virtual vigil for Disability Day of Mourning, where we honored members of our community killed by their parents or caretakers. As we do every year, we read the names of the victims and mourned. Likewise, we mourn the victims of the March 16th shootings in Atlanta, Georgia: Soon Chung Park, Suncha Kim, Xiaojie Tan, Yong Ae Yue, Hyun Jung Grant, Delaina Ashley Yaun, Daoyou Feng, and Paul Andre Michels. We continue to stand in solidarity with our Asian American community members. The increase in anti-Asian racism over the past year is a call to action for us all — we must demand justice and dismantle systems of oppression. These acts of violence come after a year of the COVID-19 pandemic, which has disproportionately affected people of color, especially people of color with disabilities. Black Lives Matter protesters continue to call attention to the ongoing crisis of police violence and anti-Black racism.  And while we welcome the release of Matthew Rushin from prison this week, his incarceration is a reminder that we must fundamentally change our justice system. As advocates, we must make sure that our solidarity does not fade away when the news cycle moves on. We must work to end systemic racism, and be proactive about fighting for the safety of everyone in our community, every day.  As always, we’re thankful to have our disability community working for change alongside us. Thanks to your advocacy, this month Congress passed the first COVID relief bill that includes emergency funding for home and community-based services (HCBS), including funding that can be used to move people with disabilities out of dangerous congregate settings. This is a huge victory for people with disabilities — but more work is needed to address systemic factors that have made COVID-19 so dangerous for people with disabilities to begin with, including Medicaid’s institutional bias. This makes the discussion draft of the HCBS Access Act (HAA), introduced this month, especially welcome. The HAA would build on the promises of the Americans with Disabilities Act and the Supreme Court’s Olmstead decision and provide the Federal Medicaid resources necessary for states to fulfill those promises. We look forward to the process of moving the HAA from a discussion draft to the law of the land. A one-pager about the The Home and Community-Based Services Access Act can be found as a PDF here. We also applauded the reintroduction of the Charlotte Woodward Organ Transplant Discrimination Prevention Act this month. This bill, which evolved from ASAN’s model legislation to prohibit organ transplant discrimination, would clarify the rights of people with disabilities to be free from discrimination when seeking life-saving organ transplants. Both this bill and the HCBS Access Act are a result of years of advocacy from our policy team, our nonprofit partners, and grassroots advocates in every state. We’ve been keeping busy with new resources and toolkits. This month, we introduced a new white paper outlining ten core principles to make higher education more accessible to autistic students. A summary of the research is also available in three formats including plain language and Easy Read, as part of our ongoing dedication to making research accessible to everyone. We also debuted our new toolkit on managed long-term services and supports (MLTSS). Good MLTSS programs can be the gateway to independent living in our communities. The toolkit, in Easy Read and plain language, can help self-advocates understand what these programs are, how they’re made, and how we can make our voices heard! And we released new cognitively accessible resources on the COVID-19 vaccine: an animated video and an Easy Read factsheet, both available in English and Spanish. Finally, April is Autism Acceptance Month! We have so many good things in store for you and our community to celebrate acceptance, accessibility, and neurodiversity. We’ll have new resources, an event reflecting on ten years of neurodiversity advocacy, and new merchandise. It’s full steam ahead as we enter April!  Your continued support makes our work this month — and every month — possible. Thank you for everything you do to make sure that when it comes to the policies that affect our lives, there will be nothing about us, without us! Sincerely, Zoe Gross
Director of Advocacy
Autistic Self Advocacy Network
Support our work

Employment law changes in 2021
ASAN applauds Congress for the introduction of the Transformation to Competitive Integrated Employment Act (TCIEA). If passed, the Transformation to Competitive Integrated Employment Act would end subminimum wage for people with disabilities, and create new opportunities to help us get and keep real jobs with real pay. ASAN is proud to support this critical piece of legislation. For almost a century, it has been legal to pay people with disabilities less than non-disabled people for doing the same job. People with disabilities, particularly people with intellectual disabilities, have been paid literally pennies on the dollar for our labor. We have been forced to work in sheltered workshops, which isolate and segregate us from our communities. These practices compound the already lower employment rates and significantly higher poverty rates of our community. Disabled people deserve better than this. We all have the right to access good jobs in the community, with the supports we need to succeed. The Transformation To Competitive Integrated Employment act is a key first step to helping us regain our economic power, take control over our livelihoods, and further integrate into our communities. This bill will recognize our rights, and build the infrastructure we need to exercise them. It has been over 80 years since the Fair Labor Standards Act was passed and people with disabilities were excluded from minimum wage protections. It is past time to right this wrong. The Transformation to Competitive Employment Act will bring the change that our community desperately needs. We urge Congress to pass this long-overdue bill as soon as possible, and look forward to working with them to make that happen.
Support our work

A multi-racial family holding hands walks on top of a globe. One of the two children points to some birds flying above them. Blue and black text reads "Start Here: A guide for parents of autistic kids"
Too often, when parents find out their kid is autistic, they receive negative messages from all sides. Many resources available to parents stigmatize autism and talk about it as something to be “overcome,” not as a part of who an autistic child is. At ASAN, we’ve heard from many parents of autistic children who wish they’d had a better resource to learn about autism — one that cuts through myths and misconceptions and explains autism from an autistic perspective. And we’ve heard from many of our autistic community members who wish their families had access to that kind of information when they were growing up. That’s what our new booklet, “Start Here: A Guide for Parents of Autistic Kids” is for!   This booklet was created in partnership with the Autistic Women and Nonbinary Network, the Thinking Person’s Guide to Autism, and Little Lobbyists. You can purchase a print or ebook copy, or get it for free on our website here. This booklet will explain: What is autism? What parents should do next Where parents can learn more What good services look like Topics such as self-advocacy, communication, and presuming competence And more! We hope that you’ll read our parent booklet and learn more about what matters to your child, their community, and how to support them. If you know of any parents of autistic people who could benefit from checking out this guide, please pass it on and share widely.  When you learn your kid is autistic, you’re also learning that they’re part of a larger community of autistic people. Your kid has a lot of people on their team, so we wanted to give you a chance to learn from their community. This booklet was made thanks to the generous support of Anthem.

ASAN February Newsletter
Dear friends, While winter weather may be sticking around, we’re still springing forward into this new year of advocacy. Here is a summary of what we’ve been up to in the last month, and of what we have coming up. We are thrilled that the work of our community over the last few years has already begun to show results. We welcome the withdrawal of Medicaid work requirements by the new administration, which will make it easier for disabled people to access health care and other vital services. This is one of the many issues we have championed over the years, so it is especially exciting to see such progress. We continue to work to make sure that information about COVID-19 — and the benefits of COVID relief legislation — are accessible to all people with disabilities. COVID-19 is especially dangerous to people with intellectual and developmental disabilities, but too often, the facts about COVID-19 are not shared in ways that are accessible to us. That’s why we released a new accessible fact sheet all about the COVID-19 vaccine, available in Plain Language and Easy Read. Because of the pandemic’s disproportionate effect on our community, It’s also important for disabled people to be included in vital COVID-19 relief. We dedicated a week of action to calling on Congress to fund Medicaid home- and community-based services (HCBS) in the current bill. To all those who made a call, sent a letter, or helped spread the word: thank you! The COVID relief bill hasn’t been finalized, so there is still time to make our voices heard: use our script to call your Senators! We joined with other disability organizations to condemn the movie “MUSIC,” which encourages the use of deadly prone restraints, after the film’s team refused to consider the input of nonspeaking and autistic people. Instead, we encourage you to take a moment of your day to listen  – by watching CommunicationFIRST’s new short film, “LISTEN,” produced by and with nonspeaking autistic people, and launched on February 12, 2021, the MUSIC US release date. On Monday, March 1st, the disability community will gather virtually across the world to remember disabled victims of filicide – disabled people murdered by their family members or caregivers. Since 2012, ASAN and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. Everyone is welcome at our Virtual Vigil, or click here to see a list of all vigils. Feel free to choose one local to you, or plan to join one whose time or platform works best for you. Applications are due March 7th for this summer’s Autism Campus Inclusion Leadership Academy. The ACI summer leadership training prepares autistic students to engage in disability advocacy on their college campuses.  ACI participants learn about making student groups, understanding disability policy, and talking to people in power. After the Academy, students get help from ASAN to meet their advocacy goals at their college. This year’s program will be held virtually from July 8th through the 16th, 2021. In addition, ASAN is hiring for a Programs and Communications Associate position. Consider becoming a part of the team and helping us to put together programs like ACI.  ASAN is proud to help future leaders in our community develop their advocacy skills, and to provide resources that people with disabilities can use to understand and weigh in on critical policy issues. We also value the opportunity to spend time remembering some of the people we have lost this year. Through all the different types of work that we do, and all the spaces we are trying to build, we are so proud to be in this fight for our community with all of you.   Sincerely, Zoe Gross
Director of Advocacy
Autistic Self Advocacy Network
P.S. We are sending all our best wishes to those impacted by the recent severe storms happening all over the US right now. If you have a disability and need help understanding how to connect to disaster resources in your area, please contact Portlight Inclusive Disaster Strategies as well as your local government.
Support our work

Genevieve BeaucheminMontreal Bureau Chief, CTV National News

@ctvbeauchemin ContactPublished Sunday, January 31, 2021 12:35PM EST

MONTREAL — An innovative, life-changing job training program is making change for Canadians with autism who are facing some of the highest levels of unemployment in the country.

Giant Steps Montreal, an organization devoted to educating autistic youth, has teamed up with grocery chains Loblaw and Provigo to provide training and internships as part of a new nine-month program.

“They have an opportunity for full-time employment, full pay [and] benefits, which is what we are hoping for them,” Wagar Adult Education Centre principal Nick Katalifos told CTV News. His school is providing students as part of the program.

The national unemployment rate in Canada is just over eight per cent, but that figure is more than ten times higher for Canadians with autism. And the new bilingual Polaris Enterprise initiative is hoping to tackle that by preparing students to be ready for front-line work.

“It’s not about social responsibility or charity. It’s really about the bottom line. And there’s a whole business case around employing autistic adults and people with disabilities,” Andre Pereira, project manager at Giant Steps for Employment Initiatives, told CTV News.

Through the program, students will be getting hands-on training for warehouse work. And in a mockup mini-mart in a corner of a cafeteria in a Montreal school, students will also learn how to take online orders and cashier training.

And this type of training can be a crucial step for Canadians to land a job.

“I have never worked before. I am not used to working in real jobs because I never had [one] before,” Ismael, a 28-year-old trainee at a grocery warehouse, told CTV News.

Eric Bourbeau, who has trained dozens of would-be workers in his 17 years on the job at Provigo, applauds Ismael’s progress so far.

“You have to take a little more time to train them, but after that, you will have a very good employee,” Bourbeau told CTV News, who said he felt these employees were big assets for companies.

In a press release, Pereira agreed and explained that beyond employers having a more cohesive and diversified team, the benefits also included higher retention rates for a business with high turnover; lower rates of absenteeism; and equal, if not higher, productivity.

The Polaris Enterprise program was inspired by a U.S. company that built a state-of-the-art distribution centre, with 40 per cent of its workforce made up of people with all kinds of different disabilities, according to the

Read in Full:


People with disabilities do best when we live in our communities and make our own choices. All people with disabilities should have the support we need to live in the community — but many people with disabilities are still stuck in institutions. 

For decades, people with intellectual and developmental disabilities have been fighting to get out of institutions and back into our communities. But a lot of resources explaining the history and policy of institutions are not accessible to the people who need them most. That’s why we’ve released two toolkits about institutions. 

The first one, Institutions: the Old, The New, and What We Should Do, focuses on the history of institutions from the 19th century to the present, and what we can do to make community living possible for everyone. This toolkit answers important questions like:

  • What is an institution? What is living in the community?
  • When did institutions get made, and what were they like?
  • What rules and laws help us live in the community?
  • Why is living in the community better than living in institutions?
  • What are new institutions like? How are they different from the old institutions? How are they the same?

When new institutions open, people often say that they will be great places for people with disabilities. But they end up hurting people with disabilities. Our second toolkit, The Cycle of Institutions, explains how institutions get opened, closed, remade, and opened again… and again. This toolkit answers important questions like:

  • What is the cycle of institutions?
  • What are state schools, ICFs, group homes, and intentional communities?
  • How are these places different from institutions in the past? How are they the same?
  • How can you tell that a facility is an institution?

Institutions: The Old, The New, and What We Should Do

Institutions: The Old, The New, and What We Should Do is available in two versions:

  • Our Easy Read Edition. The Easy Read version has 7 parts, plus a separate section with additional links and a section with Words to Know. The Easy Read version uses pictures along with large text, and has more white space.
  • A Plain Language Version without accompanying graphics. It includes a full glossary of all the words used in the toolkit.

Easy Read Edition

The Easy Read Edition is split into parts. Click on the title of any of the parts below to download it:

You can also download the entire Easy Read edition by clicking here. Plain Language Version

Click here to download the Plain Language version of Institutions: The Old, The New, and What We Should Do.

The Cycle of Institutions

The Cycle of Institutions is available in two versions:

  • Our Easy Read Edition. The Easy Read version has 5 parts, plus a separate section with additional links and a section with Words to Know. The Easy Read version uses pictures along with large text, and has more white space.
  • A Plain Language Version without accompanying graphics. It includes a full glossary of all the words used in the toolkit.

Easy Read Edition

The Easy Read Edition is split into parts. Click on the title of any of the parts below to download it:

You can also download the entire Easy Read edition by clicking here. Plain Language Version

Click here to download the Plain Language version of The Cycle of Institutions.

Support for this toolkit was provided by The Community Living Policy Center at Brandeis University. Funding for this center is provided by the National Institute on Disability, Independent Living, and Rehabilitation Research (grant number 90RTCP0004). However, the contents of this brief do not necessarily represent the policy of the federal government.

a view of tall autumn trees from below

Dear friends,

October is coming to an end, and we wish we could say that Halloween was the scariest thing happening this week. But with COVID cases surging and threats to the Affordable Care Act on the horizon, the disability community is facing dangers that are all too real. Plenty of us are feeling fatigue set in after an incredibly difficult year — but we’re not giving up. People with disabilities across the United States are speaking up by voting in this year’s election, and when our voices are heard, we have more power to make change. ASAN has spent this month educating our community about voting and civic engagement, and we know that whatever the next battles may be, people with disabilities will advocate for our rights as fiercely as ever. No matter what comes next, we’re in this fight together.

One of the first things we did this month was release a statement against the nomination of Amy Coney Barrett to the Supreme Court. As of this week, Barrett has been sworn in as a Supreme Court Justice. This puts our community’s rights in danger, especially with a Supreme Court case coming up about the Affordable Care Act. Regardless of the outcome of that case, ASAN will keep fighting to protect access to healthcare for all people with disabilities. 

With the election coming closer, we spent a lot of time this month putting out accessible information on voting. Voting can change who makes policies at the local, state, or federal levels  — and that affects our daily lives as people with disabilities. We’ve been sharing information and resources about voting under guardianship, making a plan to vote, and how and why to vote. As we approach election day, we encourage you to review your options to vote. It’s also important to remember that with more people voting by mail this year, it may take more time to count all the ballots. We may not know the final election results on Tuesday night, but ensuring that we count every vote is more important than quick election results. When the disability community votes, and when we make sure that every vote is counted, we’re saying that every voice matters.

With COVID-19 killing tens of thousands of people with disabilities in institutions, it’s clearer than ever that we need to end institutionalization and make sure all disabled people can live in the community. Our two new Easy Read and plain language toolkits explain why our society has kept deadly institutions around this long, and how we can get rid of them. The first toolkit talks about the history of institutions, what research tells us about living in the community vs. an institution, and what new institutions look like. The second one explains the cyclical nature of institutions, how institutions “rebrand” themselves, and how to break the cycle. 

We’ve also been preparing for another change this fall: ASAN’s annual gala is going virtual! We’re hosting a variety of events, from Twitter chats, to panels, to film screenings. All video or streaming content will have captions. Tickets are sliding scale. We would love to see you there!

During these next few months, lots of change will continue to happen. We encourage you to take care of yourself and your communities in this difficult time. The disability community has been using mutual aid and powerful advocacy to get through this pandemic. We will use those same strategies and skills to keep up the fight for our rights and our liberation — for as long as it takes, until all of us are free. Remember to vote if you haven’t already, and know that no matter what comes next, we’ll face it together.

In solidarity,

Julia Bascom
Executive Director
Autistic Self Advocacy Network

Support our work

ASAN Opposes Supreme Court Nominee Amy Coney Barrett

2020 Virtual Gala invitation


Many autistic people are still not receiving the good quality care they need, according to a new report from the Care Quality Commission (CQC), the regulator of health and social care services in England. The report, which is about the state of care in 2019/20, highlights the impact the coronavirus pandemic has had on the sector.

This simply cannot continue and underlines the urgent need to invest in mental health and social care support for autistic people:

The State of Care report is the CQC’s annual assessment of health and social care services in England, including those that cater for autistic people, over the past year. It looks at care both before the outbreak of coronavirus and during the pandemic. To put the report together, the CQC looked data gathered from inspections of services, along with other information including from people who use their services, their families and carers.

What the report says

One of the most important findings is that, the number of hospital inpatient wards for autistic people and/or people with a learning disability found to be poor quality has increased. Many autistic people continue to live in mental health hospitals, despite Government promises to change this. The report highlights that inspectors found poor care in many of these wards. Overall, the proportion of services rated as inadequate rose from 4% to 13%, which is extremely worrying.

The report also finds that as a result of the pandemic, existing problems in social care have been not only “exposed, but exacerbated.” These challenges included access to PPE, testing, staffing and less coordinated support than that available for the NHS. The CQC says that a long-term funding solution must be implemented for the social care sector, which remains in need of both investment and workforce planning. Whilst the Government has made short-term interventions to stabilise the system during the pandemic, the need for a longer-term plan still needs to be tackled and these issues must be “urgently” addressed. We strongly agree with this and are calling on the Chancellor to invest in the social care support that autistic people and their families need. 

Our response

Jane Harris, Director of External Affairs at the National Autistic Society, said: “This damning report shows a worrying increase in the number of hospitals found to be poor quality. This simply cannot continue. 

“Autism is not a mental health condition. It’s wrong that hundreds of autistic children and adults are living in mental health hospitals, often inappropriately, many miles away from home and unable to see family and friends.

“But without the right mental health and social care support in the community, too many autistic people really struggle, eventually hitting complete crisis and facing being put in a hospital that doesn’t meet their needs.

“The Government must put this right by investing in mental health and social care support for autistic people, and crucially reviewing the Mental Health Act so that autistic people aren’t inappropriately sectioned. Only this will end this vicious cycle.”

Further information



Heather Cook  â€¢  Follow October 8, 2020

You watch your kid trying to do homeschool online, but they can’t focus, stay on a call with the teacher, or get work done. You’re frustrated and want to help, but you’ve tried what the experts suggested, and it’s not doing much.

The following tips have been amassed from the repeated comments of many autistic people I’ve encountered, as well as my own experiences as an autistic woman and high school teacher. We’ve struggled with the same things your kid is going through, and have learned what works for us. That said, everyone on the spectrum has different strengths and challenges, so not all of these will help; try some and see what works for your student.

Calm the nervous system

Learning takes quite a bit of cognitive energy, and that doesn’t go well with being wound up, shut off, anxious, or upset. When you’re on edge, you don’t get your best work done, either. Quite a bit of bouncy, frenzied, or unresponsive behavior comes from a disorganized nervous system. Reorganizing it involves making sure each of the senses have enough input without getting overloaded.

1. Identify which senses need extra stimulation (if your student is wiggly, they might need more proprioception — the body’s awareness of where it is in space), and which senses need less (do sounds hurt?). Then look for different ways to stimulate or reduce the senses that need it. For example:

2. Let your student stim, jump around, climb, swing, spin, roll, rock, brush their skin with something scratchy or soft, flap their hands, or whatever else helps their body feel good. These things may look odd, but can be incredibly calming and organizing to an overloaded nervous system.

3. Try a weighted lap blanket, weighted vest, or simply holding anything heavy, like a pile of textbooks. The added muscle resistance can be relaxing.

4. Add aromatherapy essential oils to the study room. Different scents can calm, invigorate, or help focus. Let your student help choose ones that work for him. If he doesn’t like the scent, it doesn’t matter what it is “supposed to” do, it won’t help.

5. Background music can be helpful for some, but if your student is trying to study, read, or do anything that involves language, make sure the music does not have words — no singing. The brain has to work overtime to sort out two sources of language input at once, which can interfere with learning and drain energy and endurance faster. Try classical music, nature sounds, or ambient (think spa music).

6. Is your student a wiggler? Try sitting her on a wobble cushion or replace her chair with a yoga ball that she can bounce on while working. Either will activate core muscles and achieve the proprioceptive input the wiggling is trying to get.

7. Some people report headaches or irritability from fluorescent lights, so try replacing CFL bulbs with something else and see if that helps. Take advantage of any natural lighting you have, which is gentler on the nervous system than artificial lights.

Set up your environment for success

When too much is going on around you, it can be difficult to concentrate. However, how much is “too much” varies from person to person. For many autistic people, how much we can tolerate without side effects is much less than for neurotypicals. In fact, things that others consider white noise or minor distractions may be literally impossible to ignore.
Try to make the study area as calming and distraction-free as possible.

1. Let your student work in a room alone with the door closed.

2. Turn off the television or stereo in the next room if it can be overheard, or try wearing ear protectors to reduce sounds.

3. Dim or brighten lights to suit your student’s personal comfort level. This might be much dimmer than you are comfortable with, so resist turning on more lights.

4. The glare on glossy textbooks and screens make reading difficult and even cause headaches. Try putting a matte screen protector or colored film (translucent report covers or notebook dividers work well) over them to reduce eye strain and increase endurance.

Make taking breaks OK

After only about 20 minutes of sitting, blood starts to drain from the brain and pool in the butt. Getting up and moving frequently, even for a few minutes, keeps us all thinking more clearly and feeling good.

1. If your student feels the need to get up and move, walk away from the computer, jump around, or get a snack, please let them. It may appear like they’re not focusing, but short breaks can help them stick with it long enough to finish.

2. Optometrists recommend looking up from the computer or book for 20 seconds to a minute, several times an hour, and focusing on something more than 20 feet away (which is usually outside) to reduce eye strain and associated headaches.

3. Brain Gym exercises are easy and quick ways to stimulate different parts of the brain to work better together. Doing these at break times can help refocus.

4. Connect with nature. Even something as small as looking through a window to watch tree leaves rustle in the wind can have a calming effect on the nervous system. Repeated exposure increases the benefits.

5. All this moving may look as if your student is not concentrating, but classrooms of still, silent children do more for teachers’ sanity than children’s learning. While at home, take advantage of the ability to experiment with what best facilitates your student’s success.

6. On that note, teachers often insist kids look at them when they talk, but unless she needs to interpret visual information, use sign language, or read lips, there is no actual correlation between attention and the direction someone is looking. You can drive and follow your kid’s argument in the backseat just fine. If your student is not looking at the screen, it doesn’t necessarily mean she’s not paying attention. Ask her a question about the material if you want to check for comprehension.

7. Also, make not taking breaks OK. If your student gets engrossed in his work and doesn’t want to quit, try not to force him out of it unless it is really necessary. He’ll get a lot more done, more willingly, even if it means adjusting a routine or plan.

Let them rest afterward

Autistic brains are great at some things, but often tire more quickly from social activities (yes, video school counts), and we need more downtime to recuperate. If you ask us to go straight from school to activities or therapy to family time in short order, it is more likely to produce unwanted behaviors than to teach us how to be social.

1. When school is over for the day, let your student have some downtime to use as they choose. Don’t make this a reward that needs to be earned; it is just part of the plan.

2. Especially when things did not go well, that is likely a sign she needs the downtime more than ever. Taking away her chance to recuperate when that is exactly what she needs most will make both of your lives more difficult for the rest of the day (or longer).

3. Remember that you’re not on your best behavior when you’re tired and stressed, either. We get to that point faster than you do, and social time gets us there much faster.

Involve your student in these decisions

No one likes to be micromanaged, and we all work better when we feel we have some control over when and how we work. That is no less true for an autistic kid or teen.

1. At the beginning of each school day, agree on what you both think is a reasonable amount of work to get done. When it is done, even if it is faster than expected, don’t push for more. Let your student rest or play.

2. Agree in advance on acceptable rest and play options. Make sure some of them are off-screen, but they don’t all have to be. Unstructured free play is essential to healthy brain development.

3. Ask your student’s input on any changes you propose, and ask him later how they feel. You might be surprised about what helps.

Not all of these suggestions will work for both your student and you, and even the ones that do work won’t work all the time. I hope I have offered some ideas for removing impediments that might be preventing your student from working, and added to the toolbox of resources your family can draw upon.



Published on 12 August 2020

The Government has published guidance on the support autistic people who are unwell with COVID-19 in inpatient care should be able to get.

We have outlined the key points that affect support for autistic children and adults in inpatient care, for example in a mental health hospital, who have one of the following:

  •  any symptoms of COVID-19
  • a confirmed case of COVID-19
  • an underlying health condition which makes them part of the ‘extremely vulnerable’ group – also known as the ‘shielding’ group.

What has changed?

Testing: If an autistic person is suspected to have COVID-19 , they should be tested straight away and health professionals should keep the person under regular observation to make sure their symptoms don’t get worse.

Shielding: If you or the autistic person you support is also part of the ‘extremely clinically vulnerable’, or ‘shielding’ group, they should be prioritised for an ensuite room. This is to protect them from the virus. Hospitals should reorganise their layout and staff to make sure extremely vulnerable people are protected. If an ensuite room isn’t available, people should be put in a side bay/ward as quickly as they can to reduce the risk of getting coronavirus, or if they have the virus, of passing it on.

People who have COVID-19 will have to self-isolate as much as possible in inpatient care to stop the virus from spreading.

What if I or the person I support gets coronavirus and becomes really unwell?

  • If this happens, you or the person you support may be transferred to acute care in a hospital. Staff in the hospital and the commissioners should work together and follow their regular guidelines on transferring patients from inpatient care. They should explain what is happening and help you or the person you support to prepare for it.
  • Health professionals caring for the person you support must continue to avoid restrictive practices where at all possible. You or the person you support might find it helpful to use ourHealth Passport, which helps autistic people communicate their needs to doctors, nurses and other healthcare professionals.
  • If important decisions need to be made, they should be discussed with you, or the person you support directly as well as family members or carers. All the relevant information should be accessible, so everyone understands what’s happening. 

How should mental health hospitals stop the coronavirus from spreading?

  • If someone has symptoms or a confirmed case of COVID-19, they need to self-isolate and get tested immediately.
  • If an autistic person has symptoms or a confirmed case of the virus, staff in the service should draw up a management and isolation plan for that person. This should take into account things that might be difficult for an autistic person, for example if a staff member wears personal protective equipment (PPE), which could be frightening.
  • You have to be told if another person on the ward has been confirmed with COVID-19. Staff should also tell you if any changes have been made to the way they care for you or the person you support because they’re trying to stop the virus from spreading.
  • Autistic people might find it difficult to understand social distancing rules, especially in an environment like a mental health hospital. If you, or the person you support, do struggle, staff in the service must carry out case-by-case reviews, using legal guidance about how to support individuals.

Continue Reading …


« Older Entries Newer Entries »