Archive of ‘More…’ category

Making Documents Accessible

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Do you want people with disabilities to read your writing? You should make it accessible.

  • Describe pictures in your documents to help people who have trouble seeing. Make your descriptions easy to understand.
  • Newer versions of Microsoft Word have an accessibility checker. Run it to see if you need to change anything.
  • Write short, clear sentences.
  • When you are making PDFs, websites, or printed documents, use fonts that are easy to read. These fonts include Trebuchet, Verdana, and Tahoma. They are good because you can tell some letters like capital I and lowercase L apart.
  • If you can, print documents in Braille. Many blind people need Braille to read printed documents.

Getting Ready for Emergencies with Persons with Disabilities

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"Woman hugging child"

Emergencies happen often. A family member might get badly hurt. Your home might lose power. You may need to leave your home because of a storm. Emergencies are hard for my sister, Emily. Emily has Down syndrome and autism.

There are ways to prepare for emergencies ahead of time. There are also ways to deal with emergencies when they happen.

Tips on how to get ready for emergencies ahead of time:

  1. Write Down Your Routine. Make a list of your family’s daily routine. Keeping a routine is often important for people with autism. It is helpful to have this written down to help your family keep up with it in an emergency. More information on autism and routines here.
  2. Ask for Help. Make a list of people who are able to help your family. One way of doing this is a phone tree. You will just need to call one person. That person might be able to help your family. If not, then it will be that person’s job to call the next person on the call list. These are phone tree templates.
  3. Pack a Bag. It is helpful to have an emergency bag packed if you need to leave home in a hurry. Download a packing list for people with disabilities. 

Tips on how to deal with emergencies when they happen: 

  1. Be Patient. Emergencies are stressful. People might act differently than usual. Try to understand how yourself or your loved one with disabilities might be feeling. Also, try to think about why people might be acting certain ways.
  2. Try to Have Fun. Try to find ways to include fun in whatever you might be dealing with. For example, if the lights go out—you might build a fort with sheets. Sit inside with flashlights.
  3. Be Helpful. It can be hard to sit still when something bad happens. It might be good to help others if it is safe.

 

For more info on getting ready for emergencies for yourself or your loved ones with disabilities, please visit: the Center for Disease Control Emergency Preparedness website or the UMass Medical Emergency Preparedness and Response website.

Finding a Balance: How to be a Sister or Brother (Sibling) Caregiver of a Person with a Disability

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My sister Emily has Down syndrome and autism. I have helped take care of Emily for most of my life. Most of the time it feels normal to care for my sister and keep the usual sister bond with her. Sometimes it is hard to care for her and be a sister.

Here are some tips on taking on these two roles:

The Sister or Brother (Sibling) Role:

  1. Be a friend. Treat your sister or brother (sibling) with disabilities like any other brother or sister. Stand up for each other. Share your secrets and have some fun.
  2. Don’t be a tattle tale. Your mom and dad need to know some things. But they don’t need to know everything. There is no need to get your sister or brother (sibling) in trouble.
  3. It’s okay to fight. It is okay to get into fights with your sister or brother (sibling). My sister Emily and I argue about sharing clothes. We also get in fights about if we want to go out for pizza or stay at home to watch TV. Sometimes we want different things.
  4. No parents, no rules. We like to live by our saying “no parents, no rules” when our mom and dad are not home. Okay, there are some rules. But bedtimes are later. We also might eat too much junk food.

A Caregiver Role:

  1. Be serious. Sometimes you might care for your sister or brother (sibling). It is important to pay attention. You might need to do serious jobs like give your sister or brother (sibling) medicine.
  2. Be nice. It is easy to pick fights over things like who gets the last piece of candy. But sometimes your sister or brother (sibling) might feel sick. It is a good idea to let go of sister or brother (sibling) fighting for a while. Just be nice like a nurse would be.
  3. Ask for help. Sometimes it is okay to ask your mom or dad to find another person to take care of your sister or brother (sibling). You are busy and growing too. It is okay to take time for yourself!
  4. Talk to other sister or brother (sibling) caregivers. Caring for your sister or brother (sibling) is special. It is something you may want to talk about with other sister or brother (sibling) caregivers. Meet other sister or brother (sibling) caregivers here. 

To learn more about being a sister or brother (sibling) of a person with a disability, please visit the Massachusetts Sibling Support Network website.

We all Have Our Fears: Unfiltered, Runaway Thoughts of a Sibling

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Always Thinking

Sometimes I get worried thinking about my 30-year old brother, CJ. I think of how our parents are getting older. I think about where he can get help since he is not in school. I think of what he needs to be healthy. I think of how people treat him.

All of this thinking takes me down a path of questions with no end.

What If…

What if something bad happens to my parents?  

What if my parents’ health gets worse?

What if my mom can’t care for my brother CJ anymore?

What if my dad can no longer work and provide for the family?

What if CJ does not get the help he needs?

What if I have to stop working to care for CJ?

What if CJ gets upset because he can’t express his feelings?

What if he hurts himself again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if they put him in the hospital again?

What if they give him drugs to make him sleep again?

What if people keep treating CJ like he is not human?

For more information and tips on navigating through life as a sibling of someone with autism, refer to A Siblings Guide to Autism: An Autism Speak Family Support Tool Kit.

The Human Service Workforce Crisis in Massachusetts

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Hello, my name is Cheryl Dolan and I work in human services.

I moved from the UK in 1999, when many humans service agencies could not find staff and went overseas to hire them. We still have this problem today. We need to look at why this is and what we can do to change it.

Why is there a shortage in staff?

  • More people need support and services than before so need more staff
  • Wages are low and not too many ways to get promoted
  • Lack of people who are trained to do the job well

How does this affect people?

  • People have high turnover or unqualified staff working with them
  • People not getting the best care
  • Programs have to close, People  are losing services or are on wait lists
  • Families become stretched and have no help

What are human service agencies doing to address the issue?

  • Looking at how technology can be used to support people and reduce some staffing needs
  • Working with local and federal government to support them by applying initiatives for state employees to human service agencies
  • Looking at how to attract, train, and retain skilled employees.

How can you help fix this?

  • Make your voice heard! Make the people you vote for know you want to see increase in funding for wages
  • Support agencies seeking increased funding to provide higher wages for staff
  • Join advocacy movements like The Caring Force     

"The Caring Force logo"

Additional materials

Who Will Care? The Workforce Crisis

The Caring Force

Boston Herald: Opinion  Workforce Crisis Threatens Community

Chicago Tribune:  Article– Care Worker  Shortage

Make bedtime a fun routine

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Child getting ready to sleep

As a doctor for children, I often talk about sleep during wellness and sick visits.

Sleep is an important life skill. It teaches children how to calm themselves and rest. Parents have an important role in helping children to healthy sleep habits. Improved amount and quality of sleep affect children’s behavior and abilities to think.

Below I will discuss some tips that parents can practice for healthy sleep habits.

  • Decide with your family when is a good time to start sleep training.
  • Decide how many hours of sleep your children need. Infants sleep for 12-14 hours. Hours decrease gradually as children get older. On average, children need 10 hours of sleep. If they nap during the day, do not forget to account for nap time to the total daily sleep time. For example; 2 hours nap in the afternoon will leave your children with only 8-10 hours of sleep at night. That can be a reason why children go to bed late at night or wake up very early and refreshed.
  • Talk to your children about (tonight’s plan). For example “we will take a bath, read a story, and then it is bedtime”. Change the language based on your children’s understanding. Young children would benefit from (first…then strategy). For example “first we take a bath then we read a story”. Use picture books to share stories about sleep.
  • Use a reward system. Rewards can be increased or spaced out. Rewards can be an activity the children will enjoy, for example spending play time with parents, or reading a favorite book together.
  • Do not get discouraged quickly if some attempts are not successful. Experimenting is a key. Some plans do not work the first time or at all. Try different things. For example, some children may prefer bedtime stories and some may prefer bedtime song. Other different options parents can try; white noises, a night light, a security object/blanket or all of them.
  • Avoid high affect games or TV before bedtime. Bath and stories can help to relax your children.
  • Remind your children that bedtime is soon. For example “5 more minutes to bedtime”. Some children do not tolerate transitions quickly. You can use a fun or colorful alarm clock as a reminder.
  • Increase their Melatonin Dark room, with no TV or electronic devices.
  • Create sleep associations. Children like their routines. It is ideal if they go to sleep in similar conditions every night (same bed, room, lights off etc.).
  • For younger children, put them to bed semi-awake. Allow time for them to calm themselves. This way they learn to go back sleep if they woke up the middle of the night.
  • If your children cry in the middle of the night, attend to their needs. Comfort them, but avoid picking them up or bringing them to your bed.

Helpful Resources

Guardianship and Alternatives for Young Adults with Disabilities

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  • When people turn 18, they are legally adults.
  • They make their own medical, legal, and financial decisions.
  • This can be scary for families and young adults.
  • Parents want to stay involved with decision-making and meetings.
  • Guardianship is one way to address this.

Family discussion

 

Guardianship

  • A court decides if a person needs a guardian.
  • A Guardian will  make decisions for them
  • Guardians are a good idea for people who may never be able to make their own decisions.
  • Guardians should get training to learn their role.

Alternatives to Guardianship

 Power of Attorney:

  • A person can choose to have one and what areas they want them to help with.
  • A person can remove them when they are ready.
  • This is a good choice for people who need help now but will be able to make their own decisions one day.

Money Supports

  • Conservators, rep payees, and joint bank accounts can help manage money.

Health Care Proxy

  • The person chooses who will make medical decisions for them if they are unable to make them.

Supported Decision Making

How to Decide What Supports are Needed

Recommended reading:

 

Reversing a Guardianship Agreement

The Arc- Guardianship and Alternatives

 

Cultural Appropriation and Disability: The Problem with Using Wheelchairs as Decoration and Portraying Individuals with Disabilities as Inspirational

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Caricature of Lady Gaga in Wheelchair by Lauren Lange

Caricature of Lady Gaga in Wheelchair by Lauren Lange

The cultural appropriation of disability is a major obstacle in the struggle to achieve a just society in which individuals with disabilities are treated with dignity and receive access to supports and services to live richer, self-determined lives.

This article addresses two forms of cultural appropriation. The first form is the use of images of individuals with disabilities by able-bodied persons to promote a charity campaign/advocacy issue or to describe a current event. The second form of cultural appropriation relates to the use of images or objects associated with disability for performance art that is unrelated to disability advocacy.

When non-profit organizations or news corporations use images of individuals with disabilities that are meant to be inspirational or cause an emotional reaction, the population of individuals with disabilities as a whole are held back. This is because the images contribute to the reputation that individuals with disabilities are helpless, pitiable, and/or inspiring. The problem with being seen as inspiring is that often it stands in the way being seen as an equal. A recent example is a news story about two North Carolina State students on the football team who sat next to a student with a disability at lunch (news story). This story was widely circulated and was even posted by AUCD on Facebook. The troubling implications of this story were passionately described by Karin Hitselberger in her blog post, “Being My Friend Does Not Make You a Hero.” Hitselberger calls for change by writing: “It’s time for us to stop being inspired and surprised when we see disabled and nondisabled people engage in everyday interactions with one another. It’s time for us to stop praising able-bodied people for associating with or being friends with disabled people” (claiming crip blog). It was later revealed that the students eating lunch together were already friends and had no idea their photo was taken (real story of photo).

Those who are in a position to use these images should ensure accuracy and carefully consider the unintentional messages this content could be sending. Seeking advice from individuals with disabilities is recommended.

It is equally troubling when images or objects associated with disability are used to captivate or shock audiences in performances that are unrelated to disability advocacy. Musicians Lady Gaga and Rick Ross have used this form of cultural appropriation in live performances and music videos. Of the several live and on-screen performances in which Lady Gaga used a wheelchair, her performance as a wheelchair bound mermaid has received the most attention. Following the performance, Gaga was attacked by a group of people who threw eggs at the young starlet. It remains unclear if the attackers’ outrage was related to her inappropriate wheelchair use. Later, when Gaga and musician Bette Midler engaged in an argument about whether or not Gaga stole Midler’s act, neither of them seemed to be aware of the fact that the act was offensive.

In the case of Rick Ross, the rapper performed in Lil Wayne’s music video, “John,” while seated in a wheelchair with adornments to simulate movement called spinners. The only purpose of the wheelchair was shock value.

It was disturbing to see these musicians make light of the vital use of wheelchairs by using them for decoration. Kristin Guin, founder of Queerability, agrees. Guin, who identifies as autistic and bisexual, recommends bringing the inappropriate wheelchair use to the attention of the performers. “We would hope that the celebrity apologizes and agrees to remove the content,” states Guin.

We in the community of disability activists should not be paralyzed by anger over these instances of cultural appropriation. Instead, we should create opportunities to educate those who have yet to understand how to perceive and treat individuals with disabilities as equals. I call on anyone who encounters this type of behavior to make their opinions known.

Telepractice as a Service Delivery Model for School-Aged Children in Need of Speech, Language, and Communication Intervention

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A person using a standard desktop with a webcam,

SLP using a standard desktop with a webcam, and a secondary laptop to provide intervention via the web to a student in a remote location

According to the American Speech-Language Hearing Association “communication disorders are among the most common disabilities in the United States” (ASHA, 2008). More specifically, national demographic data gathered in 2003 identified that of the estimated 6,100,000 children between ages 3-21 served under the Individuals with Disabilities Education Act (IDEA) in the public schools, approximately 24% of students (1,470,000 students) received services for a primary speech or language disorder (U.S. Department of Education, 2005). However, despite this clear need for services, there is a well-documented shortage of speech-language pathologists (SLPs; American Association for Employment in Education, 2008; Chmelynski, 2005).

In order to compensate for the shortage of SLPs and the need for speech-language intervention services school systems have started to employ innovative strategies, such as using telepractice, to maximize existing resources and increase access to SLPs. “Telepractice is the application of telecommunications technology to the delivery of speech language pathology … services at a distance by linking clinician to client/patient or clinician to clinician for assessment, intervention, and/or consultation” (ASHA, 2013), and is a recognized form of service delivery within the field of speech pathology.

Using telepractice does not mean investing in costly equipment and technological infrastructure. In fact, telepractice can be implemented successfully using off-the-shelf and readily available technology. The most important components are computers with webcams, access to high speed Internet (preferably hard-wired), as well as a HIPAA compliant videoconferencing program (such as GoToMeeting). Using these tools, a SLP can replicate a face-to-face interaction on the computer, and can therefore provide intervention services from a remote location using the Internet. This means that SLPs can be accessed to help meet the needs of students with communication impairments, and the shortage of SLPs can be addressed using technology.

This movement within the field of speech-language pathology towards telepractice service delivery is exciting, and the evidence in support of successful implementation with students with speech, language, and communication needs is growing (Boisvert, 2012; Hall, 2013; Hall & Boisvert, 2012; Theodorus, 2011). It is important to note, however, that telepractice is not necessarily an effective method of service delivery for all students, and careful consideration of client candidacy needs to be undertaken before starting any services.

References:

American Association for Employment in Education. (2008). Educator supply and demand in the United States: 2008 Executive Summary. Columbus, OH: Author.

American Speech-Language Hearing Association. 2013. Professional Issues – Telepractice.

American Speech-Language Hearing Association. 2008. Incidence and prevalence of communication disorders and hearing loss in children – 2008 edition.

Boisvert, M. (2012). An Investigation of the Efficacy of Speech and Language Interventions with Students with ASD Using Telepractice. Open Access Dissertations. Paper 536.

Chmelynski, C. (2005). Schools are having a hard time finding enough speech pathologists. School Board News.

Hall, N. (2013). An Investigation of the Efficacy of Direct and Indirect AAC Service Provision via Telepractice. Open Access Dissertations. Paper 743.

Hall, N., & Boisvert, M. (2012). Telepractice to provide Language Intervention to a Student using AAC: A case study.  International Society for Augmentative and Alternative Communication, Pittsburg, PA.

GoToMeeting. (2013). Citrix Online, LLC.

Theodorus, D. (2011). Telepractice in speech-language pathology: The evidence, the challenges, and the future. Perspectives on Telepractice, 1, 10-21.

U.S. Department of Education. (2005). To assure the free appropriate public education of all Americans: Twenty-seventh annual report to Congress on the implementation of the Individuals with Disabilities Education Act.

Twinkies for Breakfast: Implementing the Dignity of Risk with Adults with Intellectual Disability

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twinkies yellow cake with cream filling

Hostess Twinkies Yellow Cake with Cream Filling

We were in the junk food aisle.  I was not happy about this.  The fruit aisle had been a total bust, as had been the cereal aisle.

With her hand hovering over a package of Twinkies, my sister Amelia turned to me and gave me a very grumpy look.

A woman pushing her shopping cart by us in the cramped Stop & Shop aisle scurried away, sensing an argument in the air.

As an adamant advocate for self-determination for people with intellectual disabilities, I was struggling with my sister’s food of choice for breakfast, debating where to draw my line in the sand – or whether I should do so at all.  I chose the fruit route – and made a plea for cantaloupe.

“But I do not want cantaloupe, I want Twinkies!” she declared, pointer finger straight up, “they taste good with milk and tea.”

“But, Twinkies,” I stammered, “that’s – that’s just not breakfast food!” My counter argument came out as my hand went on my hip.

“It’s my human right and you can’t stop me,” she said loudly, her back stiffening.  I recalled that Amelia was a regular attendee at her group home’s human rights meeting, in which people role played standing up for their human rights in decision-making at all levels – from self-defense to food choice.

“On the one hand,” I thought, “this human rights training is totally right on, but on the other hand, how could they let a person with pre-diabetes eat Twinkies, of all things, for breakfast?”

Agitated, my voice now met hers in decibel. “It’s my house, and my wallet, and we don’t eat Twinkies for breakfast at my house!” I stammered, attempting to impersonate a parent, now that our parents were dead.

The parental tone did nothing to further our détente. Her voice even louder now, Amelia became more adamant “They let me eat it at MY house.  I went to MY human rights advocate.  I eat one for breakfast with tea and milk. It is what I eat for breakfast.  I WANT it for breakfast.”

Freeze frame.

This seemingly simple incident in the grocery store is actually about the foundation of modern disability policy writ small and large – the implementation of the “dignity of risk.” Coined during the de-institutionalization era by disability studies scholar Robert Perske at first used this phrase to challenge disability system workers about:

 “…going overboard in their effort to protect, comfort, keep safe, take care and watch…this overprotection can…consequently prevent the retarded individual from experiencing risk that is essential for normal growth and development.”  (Perske, 1972: 24)

By reflecting on the potential gain from experiencing day-to-day risk, Perske championed the need for people with intellectual disabilities to be able to take such chances as well.  While I am doubtful that Perske thought much about Twinkies for breakfast, he did comment on the need for ‘prudent’ risk taking, stating:

“Knowing which chances are prudent and which are not—this is a new skill that needs to be acquired…Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk-taking and there can be crippling indignity in safety!” (Perske, 1972:24).

Perske’s commentary has informed the disability service community to think deeply about how to best support people with intellectual disabilities living and working in the community. And yet, I wonder, have we really had the conversations we need to have as service providers and advocates about the nitty gritty of the implementation of the dignity of risk – say – when it comes to Twinkies?

“Well,” I thought, “here I am, on the front line of implementing this important principle via arguing with my sister about the merits of a healthy breakfast versus the demerits of Twinkies. “Somehow,” the cynical me thought, “we’ve taken a wrong turn on this human rights stuff.” The disability rights movement supporter in me nearly passed out at this thought.

Taking a deep breath – and a new tack – I posed this question to Amelia.  “OK, I understand and agree that it is your right to choose Twinkies, but will you at least ALSO have some fruit, and think about how Twinkies impact those sugar levels the doctor warned you about last week, you know, because of how you’ve been feeling sick sometimes?” As her sister and pseudo parent-figure, I felt compelled to lecture, and yet I also felt like a hypocrite, failing in my chance to effectively implement of the dignity of risk.

I was met with silence as Amelia defiantly placed three packages of Twinkies in the shopping cart. So, as many parents have likely done, I bought the Twinkies in order to avoid a scene in the grocery store. And, needless to say, Amelia had her Twinkies for breakfast the next morning, with tea and milk – and did give a bowl of cantaloupe a try.

While Amelia has since moved on from Twinkies to Count Chocula’s best, we do continue our discussion of her “sugar problem” and the importance of healthy choices, but the process is slow.  I am often stumped about how to support an adult with an intellectual disability on making choices, as I believe a balance must be struck between supporting self-determination that incorporates the ‘dignity of risk’ with the need to support a person’s health “security.” Or, maybe that’s just an overprotective sister talking.

So, when I find myself struggling with Amelia over such issues as Twinkies – and more recently dating, sexuality and contraception – I look back to Perske to guide me. Recently, in looking over his seminal writing on the topic, Perske also addressed the disability service community, asking them to look within:

“Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try.”  (Perske, 1972:24)

And in reading this passage, I was able to step outside of myself.  I look back at myself and see that it has taken me too long to realize that much of the learning that needs to be done is learning on MY end. While my health-focused conversations with Amelia go on, I have learned to back off and respect my sister in ways I never thought I could.  And in turn, Amelia has, on occasion, surprised me in asking for melon for breakfast.

Perske, R. 1972. “The dignity of risk and the mentally retarded.” Mental Retardation 10:24-27.

Note: The name “Amelia” is a pseudonym and is used to protect the privacy of the author’s sister

Dr. Elspeth Slayter is a Fellow in the Advanced Leadership in Neurodevelopmental Disabilities Program at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. Dr. Slayter is also an Associate Professor of Social Work at Salem State University in Salem, Massachusetts.

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