Tag Archives: community

Disability Policy: Clinton Versus Trump

Activism/Advocacy, , , , , ,

In a few weeks we will have elected a new President of the United States. Many of us get our information from watching TV. The trouble with this is we only get the information the TV decides is news worthy. Unfortunately, most things concerning disability are not newsworthy. This means that rather than seeing a candidate’s disability policy on the evening news we are more likely to see a candidate’s latest purported scandal whether it is about deleted emails or admitted past sexual abuse. While these things can be informative, I think it is helpful to also understand where the two major candidates stand on issues directly affecting the disability community. Here is some of that information put side by side for comparison.

Specific Disability Plans

Trump: There is nothing specific on Trump’s website regarding any plans for any disability in particular. However, I do remember a few months back there was at least one line that said he wanted to expand mental health coverage. I believe it was in reference to veterans.

Clinton: On Clinton’s website a comprehensive plan for autism and for mental health is outlined in detail along with her plan for combating HIV/AIDS both in the United States and abroad.

The autism plan is quite comprehensive covering many areas such as expansions in early screening and insurance coverage. Additionally, several life span issues affecting autistics are addressed including plans for targeting bullying in schools, getting assistive technology to those who need it, life span caregiving for those who need it along with community living options for adults. I have just learned this morning that part of the research she is in favor of funding includes genome mapping which, if realized, will undoubtedly lead to less autistic people being born.

Her mental health plan addresses areas of earlier diagnosis and treatment, expanded insurance coverage and brain research. She emphasizes treating the whole person in an integrated fashion.

Health Insurance and Medicaid

Trump: He plans to repeal Obamacare, going back to insurance coverage as we had before Obamacare became law. In the free market health insurance plans denial of coverage for pre-existing conditions would come back into play. Additionally, the coverage of adult children to age 26 that the Affordable Care Act brought about for us all goes away leaving many of the nations young adults uninsured. Workplaces would not have to offer health insurance to employees.

Insurers would be free to offer any plan of their choosing in any state of their choosing. All health insurance premiums would be tax deductible. His plan to reduce prescription drug costs is to get the drugs from other countries where they are cheaper, but may not meet the quality and standards of our country. He supports tax-free health savings accounts.

As for Medicaid, Trump’s plan is to turn it over to the states through block grants allowing each state to use the money as they see fit to provide some or all of health care costs to Medicaid eligible individuals.

Clinton: She sees affordable healthcare as a basic human right and would expand the Affordable Care Act (Obamacare) and apply fixes to the parts that are not currently working well. Her goal is universal health coverage for all Americans. At this time she plans to leave Medicaid intact and expand it’s coverage to include all low-income citizens.

Clinton’s plan is to reduce co-pays and deductibles. She further plans to reduce prescription drug costs through bargaining. Mental health treatment is slated to become part of ordinary healthcare. A specific autism plan includes increased access to services across the lifespan.

Community Living/Medicaid Waivers

Note: In the past children with complex or severe medical conditions were often institutionalized. Today it is more common for families to receive a variety of support services that allow their children to remain home while receiving the medical care they need rather than being placed in institutions. The funding for these services comes through Medicaid Wavers, which turns out to be less costly than institutionalization.

Trump: No record can be found of Trump ever addressing this issue specifically. However, he has stated that mental institution and mental health programs in this country need to be reformed without giving any details on how he proposes to do so.

Clinton: There are numerous plans on Clinton’s part which include

~~ Supporting Developmentally Disabled Act along with creating the Autism Plan that both allow for or expand support services at home for all children with disabilities, especially support services to caregivers

~~ Strongly supporting the Olmstead decision that allows individuals with disabilities to live in community settings and has a plan to ensure each state is in accordance with carrying out this provision

~~ Plan for expanded support provided to individuals that make it possible for them to live in a variety of community settings

In conclusion, it is helpful to look at these candidate’s websites and to listen to their campaign speeches. It is also important to me to see how they have treated people with disabilities over the course of their own life and during the course of this presidential campaign.

While Trump has only discussed disability in reference to veterans and has publically mocked a news reporter with a disability, Clinton has spent her life working on behalf of individuals with disabilities. She has outlined plans to support people with disabilities to live in integrated community settings, to improve employment with fair wage opportunities and to provide tax relief to caregivers. Clinton has been the only candidate to give an entire campaign speech on disability rights. She is the only candidate to articulate both a comprehensive plan for mental health and a comprehensive plan for autism.

While it is good that Trump is concerned about disability issues for veterans, it is much more inclusive that Clinton is concerned about disability issues for a much wider range of people affected by disability as evidenced by thought out plans including a way to pay for them.

For me personally, even though I am well able to compare and contrast where the candidates land on issues I also have a personal question I ask of myself before voting. As President, who will put each of us closer to the reality of life, liberty and the pursuit of happiness – Trump or Clinton? For too many disabled people alive today this has not ever been reality.

c-v-t

BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on October 25, 2016.
Click here to comment.

Providing Sameness and Routine While Living In Unfamiliar Surroundings

Activism/Advocacy, Visual Supports, , , , , , ,

Many children with special needs thrive in an environment with a high degree of predictability, sameness and routine. In the aftermath of a natural disaster life is anything but what our kids need to succeed. Often entire families, neighborhoods or communities are in the flux of confusion, chaos and change and will be for quite some time to come. Putting sameness and routine back into your child’s life as quickly as possible will be helpful. How can you do that when you have no idea what life will hold for you and your family in the days ahead? Here is one simple strategy that can be used in many different ways:

Visually mark what belongs to your child. You can do this with masking tape, stickers or a washable marker. When everything is new and living spaces are suddenly shared it becomes difficult for children to understand boundaries. I wore a roll of masking tape around my wrist for several days while in a shelter. I used it in a variety of ways. The more I used it, the more my children came to understand that when they saw the tape it meant “this belongs to me” or “this is where I can be.”

Visually Define Space:

  • Put tape on the floor to define boundaries of your family’s sleeping space, your child’s play space, etc.
  • Put a blanket or sheet on the floor to visually define a play or homework space, knowing that while the actual place to play or do homework may change, the sheet or blanket can be a constant.
  • I put tape on the chair where my kids could sit for meals – the chair was always a different chair and in a different spot, but putting a piece of tape on it right before my child sat on it visually defined the space and provided a sameness and routine of sorts.
  • One child was so disorganized as to need a piece of tape on his plate and cup in order to eat and drink.
  • If using unfamiliar bathrooms are problematic get and use a potty chair. Put tape on the potty chair if needed. Great if the potty chair can be used in the bathroom, but in reality it is more important that your child use the potty chair than where the potty chair is located.

Visually Mark Belongings:

  • Staying hydrated is more important than eating solid food in the short term. If bottled water is provided try to get a half dozen of the same bottles to keep. Each day the kind of bottled water available may change. If you are using tape, stickers or markers put them on these bottles of water. When the bottles are empty you can refill them from differently labeled bottle water if necessary in order for your child to accept it as something that belongs to him and increase the likelihood he will stay well hydrated.
  • Children may, out of necessity, need to get used to a whole new wardrobe all at once. Some things that may be helpful when choosing from the clothing immediately available include choosing the softest fabrics (second hand clothing often is more acceptable on sensitive skin than new clothing). Sweat suits in cold weather or t-shirt/short sets in hot weather can serve as both clothing and pjs eliminating the need for your child to change out of pjs if that is an issue. Many times new clothing will be donated at shelters. If possible choose several days worth of the same outfit for your child. This means he will have many days of new clothes, but each outfit is exactly the same. If purchasing new clothing several of the same outfit in different colors may be helpful in that your child will have several outfits that all feel the same to wear. Sweat suits or t-shirt/short sets can eventually become pjs in the weeks ahead as you introduce new outfits for daytime wear.
  • If your child has become used to having things marked with tape or markers you might also mark his clothes so he can feel like he is indeed wearing his own clothes, as evidenced by the tape or marker spot. These markings can be placed on the front inside hem or on the outside if necessary for your child to have it visible without needing to flip the hem over to check. Put the same mark in the same place on every outfit.
  • When your child receives toys, books or personal care items such as toothbrush and comb you can also mark these items to visually identify to your child that these items belong to him.

These are but a few ideas to get you started in bringing some predictability, sameness and routine back to your child even when, in reality, there seems to be no anchor in your daily life just now. Visually defining space and marking belongings can go a long way in helping your child make sense of the confusion, chaos and change that comes with picking up the pieces after a natural disaster.

10422161_10152467418368177_1518670106510492661_n

BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on October 16, 2016.
Please leave comments here.

A Visual Schedule for Use in Natural Disaster

Visual Supports, , , , , ,

Many children with special needs use a visual schedule to organize their day. A visual schedule shows which activities and the order in which the activities will happen. A visual schedule can map out a big chunk of time such as an entire morning, afternoon or even a whole day. A first/then visual schedule shows what will happen just now (first) and what will happen next (then). (Endow, 2011)

If your child uses a visual schedule it is important that you continue using a visual schedule through the aftermath of a natural disaster. This can be difficult when you do not have access to your child’s usual visuals or, in many cases, may not even be able to live in your own home for several days. Here are some quick tips to create a visual schedule to support your child even if you yourself have no idea what might happen as the day unfolds:

For a Child Who is a Reader:  Use any paper and write the daily activities you know will happen even if you do not know exactly when or how they will happen.

Example: For sure your child will wake up, eat meals, use the bathroom, get dressed, etc. Use these ordinary activities to anchor a schedule.

Then, in between these items you can insert the phrase “mom will figure out what goes here ____________.”

Adaptation For a Child Who is Not a Reader:  Draw a happy face, label it MOM (or the name of the adult in charge) and explain what it means. If your child cannot comprehend an explanation you can teach it to him by using a routine. When it is time for MOM on the picture schedule you can draw your child’s attention to it and say, “MOM’s time.”  Do this the same way using the same words at each schedule transition time so your child comes to know what this visual means.

Then, when it is “MOM time” you can insert what ever needs to go on the space regardless of what it might be. I have used this sort of schedule successfully with many children when I myself have no idea what the day will hold.

Anti Anxiety Tip For the Child Who Needs His World Sorted Out:  Make a point to let your child know you will always show/tell him ahead of time whenever something new or different will be happening.  This isn’t always easy. You may be asked to move locations or share space in an emergency shelter in the spur of the moment.

When I stayed at a shelter and these sorts of things happened I took my children to “the office.” In reality it was the bathroom – the only truly private place available.  I would then give them the scoop on the change or the next thing coming. I then fixed the schedule to incorporate the information. Then, we would all take five slow deep breaths, putting our fingers up to count each breathe and on five we would calmly exit the bathroom. It seemed to work better some days than on other days. Having this routine was helpful to us all, decreased overall anxiety and left us all with a sense of belonging and family camaraderie.

Conclusion:  If visual schedules have been part of your child’s life before the natural disaster, these are some ideas to start your thinking in useful ways you might easily support your child when you yourself may not know much ahead of time what will happen when.

10599593_10152349216328177_3270452375736054469_n

BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on October 13, 2016.
Click here to leave comments.

Autism, Hidden Curriculum and Making Friends

Autistic "Behavior", Communication, Hidden Curriculum, , , , , , , ,

It can be difficult for some autistic people to sort out what things are okay to say and what things are not okay to say in various social situations. This was true for a high school student I worked with during the past year. William very much enjoyed talking with others, but was asking questions and making comments that were not appreciated by teaching staff. Worse, these comments and questions were causing other students to avoid him rather than include him in social exchanges. Each time teaching staff explained to William that his comment had been offensive and had caused other students to move away from him William would feel bad, say he would not make that comment again and could even come up with alternative comments to use in the future to replace the offensive comment. After two years not much had changed in William’s ability to refrain from using offensive comments or ask questions that were considered rude or inappropriate.

I was tasked with spending an hour a week with William in regard to this situation. During our time together he would tell me how things were going at school. He wasn’t able to identify comments he had made that had gotten him in trouble or questions he had asked that had been met with rebuff. Before using these words his only goal had been to be friendly in seeking out social interaction with other students or teaching staff. He had not meant any harm by his words and really didn’t seem to know after using problematic words that they were indeed problematic.

I knew from working with William in the past that he learned more readily when he could see it written down. We started a running list of comments and questions. I tried to make it fun by rolling my eyes and saying very exaggeratedly, “Oh, my gosh! That’s one for our list!” After a few weeks William started asking immediately after saying something questionable, “Is that one for our list?” Here is a sample of William’s list:

YOU MAY THINK IT, BUT PLEASE DON’T SAY IT IF NOTHING GOOD WILL COME FROM IT

  • That jacket is ugly.
  • Why does your breath stink?
  • What you are talking about sounds boring.
  • Your feet look too big for your body.
  • I don’t like you as much as I like Jeff, but I do like you enough to talk to you when Jeff is absent.
  • It smells like feet in this lunchroom.
  • Do you have poop stains in your underwear?
  • If Miss Jones had a husband she could kiss him.
  • I never saw any clothes as big as Mr. B’s!
  • Green notebooks are the worst. (friend has green notebook)
  • My armpits stink. Want to smell them?
  • I can see boogers in your nose.

Over time, William could hit and miss guess when he said “one for the list.” This led us to look at how one might actually become a better guesser about having said “one for the list” before other people actually told them. (For more information on this see Learning the Hidden Curriculum: the Odyssey of One Autistic Adult). Once William was able to identify when he made a social error we worked on strategies to repair a conversational glitch. This process took most of the school year, but certainly paid off for William in terms of increased friendships and teachers understanding his struggles and being able to support him better.

IMG_5091

BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on August 19, 2016. Comment here.