Category: Community

Massachusetts Personal Care Attendant (PCA) How-to Training Videos

We want to share some information about Personal Care Attendant Services in Massachusetts.

The Personal Care Attendant Workforce Council developed new training videos for Consumers, Personal Care Attendants (PCAs) and Job Seekers. These videos explain:

  • Directory Basics Video
  • Consumer Video
  • Worker Video

There are questions and answers for both consumers and workers.

Consumers that need PCA services during this public health emergency can call the MassOptions call center at 1-844-422-6277.

  • The MassOptions call center will connect these consumers to home health services in their region

Training Videos and Frequently Asked Questions (FAQs)

EasyCOVID-19 Project Now Recruiting!

Please help EasyCOVID-19 simplify COVID-19 info world wide!

The EasyCOVID-19 project is now recruiting people to help us simplify COVID19 terms. Please help us by visiting our EasyCOVID-19 crowdsourcing app. This is the start of our project to simplify the COVID-19 information published by every country’s government websites.

Overall Plan

We will start with the Massachusetts. We will then expand to the other U.S. states. We will then move to the 18 English Speaking countries, then the 21 Spanish speaking countries, then the world! This will help many huge populations, such as people with cognitive disabilities, non-native language speakers, the Deaf, and seniors. When they understand how to be safe and healthy, the whole world will be safe and healthy.

Our project would not be successful without:

Please help us now!

For more info, see our EasyCOVID-19 Website!

Advanced Leadership Fellowship Opportunity – Leadership Education in Neurodevelopmental & Related Disabilities (LEND) Program

Leadership Education in Neurodevelopmental & Related Disabilities (LEND) Program

Deadline for applications is June 1, 2021

September 2021 to June 2022

$12,000 stipend available

The LEND Program at the E.K. Shriver Center/UMass Medical School in Worcester, MA prepares professionals, persons with disabilities, and family members to influence policy and clinical practice on behalf of children with developmental disabilities and their families.

We are looking for applicants who:

  • have relevant experience in the disability field and leadership potential
  • have professional degrees in health and/or clinical disciplines, disability studies, or policy. Other professional qualifications may be appropriate.
  • are individuals with disabilities, self-advocates, or family members of people with disabilities interested in pursuing careers in disability policy/systems change
  • LEND coursework can be credited towards a Master of Public Administration (MPA) from Suffolk University at reduced tuition.

~ The LEND program involves a minimum commitment of 1 day/week ~

For questions or more information contact:

For additional program information and application forms, visit our website:  https://tinyurl.com/ShriverLENDApplication

INDEX COVID-19 Emergency Information Update

INDEX collects and keeps up-to-date information on programs, providers and services in Massachusetts that have something to offer to people with disabilities. We try to provide information relevant to the changing COVID-19 situation and offer updates as new information becomes available for  people with disabilities in Massachusetts.

As businesses, day programs, and schools are in the process of reopening, up to date information is helpful. Practicing safe social distancing, limiting of group size, wearing of masks, and other precautions  continue to be important, particularly for people with disabilities and elders who are often more vulnerable.  

We are continuing to update our COVID-19 Emergency Information web page.  Newly added links include Massachusetts Return to Day Program Risk/Benefit Discussion Checklist in English and Spanish and a link to Mass.gov COVID-19 Daily updates.

Updated COVID-19 Emergency Information

Links to current information about COVID-19 virus. This page is updated with new information.

Black and Disabled: A Death Sentence

Sign disable black lives matter too

Violence against people of color has been in the news a lot. Police are using too much force against them. This is even worse for people of color with disabilities.

This fall, police killed Keith Lamont Scott. He had a brain injury. Charles Kinsey helped people with disabilities. He was taking care of a patient with autism. He was also shot. More than half of people hurt by police have a disability. This should cause us to worry.

We do not know enough about disabilities. People in charge do not either. This puts people at great risk to be hurt by people in charge.

People in charge should:

  • Know how to spot disabilities
  •  Not jump to conclusions
  • Know that many disabilities cannot be seen
  • See their own racial biases

Every human has the right to feel safe. They should feel safe within their own skin. No matter what it looks like. No matter who is inside.

References:

Chokshi, N. (2016, October 17). Keith Lamont Scott was killed by two gunshot wounds, family autopsy finds. Retrieved October 17, 2016 from The New York Times

Harrell, E. (2014, February 25). Crime Against Persons With Disabilities, 2009–2012 – Statistical Tables. Retrieved October 28, 2016, from, Bureau of Justice Statistics

Neyfakh, L. (2016, July 21). Charles Kinsey did everything he possibly could not to be shot by police. Retrieved October 28, 2016, from Slate

Looking at the whole person?

Roles

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black and white masks

Have you ever stopped to think how many roles you played today? I bet you would be surprised at how many. For me, today I was a human service worker, shopper, friend, student, cook, and pet owner to name a few. The roles we play in life vary in how we and others value them. Sometimes I am Assistant Vice President, which I deem a valuable role. Others may not feel the same way. They may prefer to pick up and take off whenever they please. At times, I play the role of Democrat. Those who do not value politics or my views may not see this as an important role.

A Human Service View

I spend a lot of time at work reading or hearing about people with different abilities. Everyone has his or her own goals and plans for the future. They also have their own stories. I may never meet them in person, but I learn about them through their stories. After taking a class *, it occurred to me that their stories are only a piece of what makes them “them”. What I realized is the way a person is described places him/her into roles. These roles are not always valued in our society.
When I started working in human services, there was a focus on Person Centered Planning (PCP). The idea of PCP is care centered around the person. At the time, it seemed to make sense. Now I fear we may have missed the point. Much of the focus for people I work with is learning new skills. We work on life skills to help the person fit better in their world. While working on life skills we cannot forget the importance of social skills. There is value and balance when both of these skills improve.

How can we change?

So how do we change our ways? How do we help someone gain valued social roles? It starts with understanding what society values. Today’s society places a high value on money, health, youth, and freedom. These are words I do not typically see in the stories I read about people. In my job, I sometimes find the words used to describe people set limits on the person. We focus on what people cannot do instead of what they can do.
A shift to focusing on abilities and socially valued roles is essential to overall quality of life for anyone. Every person is valuable, but not all roles are valued. Let’s celebrate people for who they are instead of describing people in terms of what they are not. For more information on Social Role Valorization, community inclusion, and similar topics, check out the websites listed below.

* Dr. Wolf Wolfensberger’s theory of Social Role Valorization

Community Training a Service Dog

palm out on a stop signAfter 13 months I am ready to take Orenda with me into the world and get her used to the ways a service dog has to act, and not act.  It has taken me this long because she was rescued and so she hadn’t lived in a house and had to learn that.  She would destroy things in the house, like couch pillows.

She was anxious in a new place and when I was gone.  So I taught her:

  • relax
  • pee and poop outside
  • chew rubber toys not shoes and library books

For a while I had to put up a gate in a room and keep her there when I left.  But not now.  Not for some time now.

Also, I have low energy because of being depressed for a long, long time.  So I haven’t been as on top of training as I could have been.  Should have been?  Is there a point in saying that?  It just is.  I have learned that the state of being Disabled isn’t bad or good – it just is.  It took a long time to get that, when everyone tells you it’s sad and wrong.

So, I have been teaching Orenda, my tall yellow dog, to not pull on leash or in harness.  We work on it a lot in small bits of time.  “

  • “No pull.”
  • “Over.”
  • “Good Heel.”
  • “Walk Nice.”
  • “Good Walk.”
  • “Go Ahead.”
  • “Yes!”

Community training is taking a dog out into the world with you, to get him or her used to everyday things in the world.

  • How to ride the bus and subway.
  • Where to sit or lie when on them.
  • Not to lick the floor!
  • To leave dropped food alone.
  • Not to drink from puddles.
  • Not to lunge after dogs, squirrels, birds or cats.
  • Not to bark.
  • Not to go over to people unless told to.
  • How to go through revolving doors.
  • On and off escalators.
  • Turnstiles.
  • To go under tables in restaurants.
  • To stay on a mat until released.
  • To ignore people and other dogs.

You get it.

Last Saturday, I took her to class to see how she did.  I had been doing “Go To Bed” in the house with her.  I brought a mat I wove for my last Service Dog.  Before I sat down in class, I put down the mat.  I told Orenda “Go to Bed.”  I had to remind her a few times.  She tried to inch toward me so her butt was on the mat and the rest of her closer to me.  She did really well.  Better than I hoped.  She was very good.  I told her.

If you see a dog with a person, take a minute to look closely.  It might be a service dog.  They won’t always have a harness on.  Many do, but not all.  They don’t have to.  Some people train their own, like me. Before being a working dog, service dogs are ‘in training’.  They have to learn a lot before being fully trained.  My point is:

  • Don’t pet a service dog.
  • Don’t feed a service dog.
  • Don’t bark or meow at a service dog.
  • Don’t talk to a service dog.

Not before asking the person, the handler. This sounds simple, but all of this has happened to me with my last dog.  And he wore a red harness on black and white fur!

A lot of people seem to wish they could have their dog go everywhere with them.  They think it would be fun.  They are jealous and even sometimes pretend their dogs are service dogs!  This may be against the law. It makes watchers doubt service dog users’ need for dogs if you don’t “look like you need one” to other people.  There are many types of Disabilities, most you can’t see or tell.  You can begin to see how much work it is to train a service dog, even before task training begins.

People use service dogs because we need to.  It’s not fun to have to take care of and watch out for a dog and yourself all day long.  Even the best-trained dog is still a dog.  I have to take all the dog’s stuff with me too: food, water, bowls, a mat.  In winter, a coat, maybe boots.  Salt and ice hurt their feet.  Even if you love dogs, please leave that cute dog on the T alone and don’t distract them.  They could be working.

See this article that explains what makes a service dog.  Section II is the part to read.

The article is from the ADA (Americans with Disabilities Act) National Network publication “Service Animals and Emotional Support Animals”.

On Language

drawing of a human head with letters inside.I speak English. You speak English. But the English we speak is not the same as our grandparents spoke. The English your grandparents spoke was not the same as was spoken in the 1800s. Language, like people, changes over time.

In the 1960s and 1970s, people used different words than we do today. Some of these words we think of as mean.  ‘Retarded’, ‘Crippled’, and ‘deaf and dumb’ were all common once.  Over time, people saw how hurtful these words were. Then they stopped using those words.

In the 1990s, some people had a new idea they called ‘person-first’ language.  It means you always talk about people before you talk about their disability. So, instead of saying someone is:

  • blind, you say they have vision loss;
  • physically disabled, you say they use a wheelchair;
  • autistic, you say they have autism

In the past few years, some disability rights activists have been saying they do not like person-first language. For a number of reasons, they like identity-first language, phrases such as:

  • autistic person
  • blind person
  • wheelchair user

They say there is nothing wrong with being disabled. I, as a disabled person, agree with them. The people and culture around us have said being disabled is bad. It is other people, who are not disabled, that said disabled people were not human beings. Some people say talking about the person first reminds everyone we are people. Disabled people know we are people. We do not need to be reminded.

There is another problem with person-first language. It says people and their disability can be separate. If you have something, then you can one day not have it. But a disability is not like a broken leg. It cannot be cured. For the vast majority of disabilities, people just learn to live with them.  As Ari Ne’eman, president and founder of the Autistic Self Advocacy Network once said, ‘When I go on a trip, and the airline loses my luggage, I still arrive with my autism.’

Lydia Brown, who proudly identifies as autistic, has written about this in great detail. Her article gives links to different people’s thoughts from around the web. It talks only about autism. But, it is not just the autism community that this is happening in. Other disability communities are also talking about identity-first language.

Changes that need to happen in the day program’s rooms

edlerly people making cookiesI work at a home care with people with disability. They go to the day program and work all day. The day program has rooms they are placed into depending on their ability to work. I think how the individuals are placed into those rooms needs to change. The guys are not put there the right way. I think they should put in the room people that could help each other to be better than they were before. They should put in those rooms people that can work together. For example, in a room they should not put a blind and a person who does not talk together because it makes it hard for them to work in-groups. It makes that person not be better. He or she will learn nothing from each other.

For more information visit: day program website