Little Lobbyists

author:

 

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I am the parent of a child with a disability. She has a lot of medical needs too.

Kids who have a lot of medical needs can have a nurse in their home. MassHealth approves this service.

Parents have a hard time finding nurses. There are not enough nurses working in homes.

Nurses who work in homes make a lot less money than nurses in the hospital. This is a big problem. 

The campaign started in April 2016 to help parents find nurses at home. 

Nurses at home keep kids: 

  1. Safe
  2. Healthier
  3. Out of the hospital
  4. Attending school
  5. Being in the community

 

If you want to learn more, email manursingcampaign@gmail.com.

Tips On Helping Someone In An Emotional Crisis

author:

I have taught a few different programs that teach people how to handle crisis situations.  I have also been the supervisor on duty when serious incidents have occurred while working at a children’s home in NH.   These experiences have proved to be valuable.

·       Step one starts before the crisis.  Think of what you like to do when you are happy.  If you do these activities when you are upset, it may help you feel better.

  • Examples:
    • Taking a walk
    • Taking space in another room
    • Using an iPad or other smart device
    • Knitting
    • Reading
    • Writing
    • Listening to music
    • And so many more

·       Get away from what is upsetting you if you can.

·       Use your coping activities to help ground yourself.

·       Do a self-check.  Are your basic needs met?

·       Check in with a friend.

 

References And Resources:

·     http://www.mandtsystem.com/

·     https://www.crisisprevention.com/

·     http://www.safetycare.com/en/

Getting Ready for Emergencies with Persons with Disabilities

author:

"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

author:

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.

Lessons in Listening

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I have learned a lot from all of my children – about who I am, what matters, how right my own mother was!  What it means to listen, to really listen, as a mom and as a therapist, was shown to me through my journey with my youngest child.  In today’s blog, I’d like to start at the beginning of that journey.

When I was pregnant with my third daughter, I thought I knew all that I needed to know to take good care of her and enjoy doing it.  I had two children who were healthy and happy and well-adjusted and I hadn’t broken them or steered them wrong.  I was going to relax with this new baby.  I was going to revel in her small-ness and snuggle her all day and not worry as much about schedules and routines and all the concerns of new moms.  I knew how to do this.  I really had given it that much thought!  So when just days after my sweet girl was born I learned that she was deaf, I was more than a little thrown.  I did not know how to do this.

*More than 95% of deaf and hard of hearing babies are born to hearing parents.*

For five days I thought everything was fine.  I fed her and held her and shared her with her sisters.  I was a tired but happy and confident mom.  Minutes after learning she was deaf, I questioned everything.  How could it be that she hadn’t heard me sing to her, talk to her, let her know I was there?  Was she scared?  Was she ok?  How would I tell her stories and talk to her about boys? I had so much to learn and it did not feel like I would ever have the energy it would take to figure it all out.

*My daughter was the first deaf person I ever knew.*

I remember those days early in her life.  I felt lost when I thought too much, but she was happy and healthy and she responded to me.  She liked to be close.  She liked to eat!  She liked to sway and dance.  I remember feeling silly singing to her because she couldn’t hear me.   I touched my lips to her forehead as I sang and hummed anyway.  I touched my face to her cheek when I told her I loved her.  She couldn’t hear me, but I could listen to her, for her.  I could pay attention in a new way.

If you are the parent of a new baby who is deaf or hard of hearing and want information on resources for you or your child, connect with the MA Universal Newborn Hearing Screening Program.

Use of an AAC, the good and the bad

author:

AAC Board

As a BCBA, I teach people how to use Augmentative & Alternative Communication (AAC) devices. AAC devices help people communicate who have trouble asking for things they want.

The good results:

An AAC device enables people to do more in their home and community. When an AAC device is successful:

  • The whole team works together.
  • The team uses the AAC device to communicate.
  • The AAC device is setup for the person.
  • The AAC device enables the person to get their favorite things.

When everyone works together, an AAC device can enable people to get their favorite things.

The Bad results:

When the wrong program used, or the AAC Device is setup wrong. It often ends up going unused. This happens because:

  • The AAC is too complicated.
  • People don’t use the AAC device.
  • The person’s favorite things are not added to the AAC device.

AAC Devices can help people. Work with an expert when you start working with an AAC device.

Some online resources for selecting AAC programs:

Jane Farrell AAC App List – a list of AAC Apps.

PrAACtical AAC Blog – more AAC resources.

 

 

 

 

 

What does it take to be a support worker for someone with a disability?

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I have been working with people with a disability for 10 years. I want to share what I think  they should be good at. A person has to like working with other people and helping them. Support workers do a lot of work and they are great people. The name of the job might be different at different places, but you still do the same things.

 

 

Support workers:

  • Talk to people with respect
  • Calm                                                                                     ""
  • Caring
  • Selfless
  • Think about things before you do them
  • Talk to everyone
  • Being kind
  • Teach people to speak up for themselves
  • Understand people
  • Assess situations
  • Be honest to people
  • Work with other people
  • Be self-confident
  • Trust
  • Show compassion
  • Be positive
  • Be a good listener
  • Cheer people up
  • Motivate

This site has 13 traits of a support worker: https://personalsupportworkerhq.com/qualities-of-a-psw/

Massachusetts Pediatric Home Nursing Care Campaign

author:

 

""

 

 

 

 

I am the parent of a child with a disability. She has a lot of medical needs too.

Kids who have a lot of medical needs can have a nurse in their home. MassHealth approves this service.

Parents have a hard time finding nurses. There are not enough nurses working in homes.

Nurses who work in homes make a lot less money than nurses in the hospital. This is a big problem. 

The campaign started in April 2016 to help parents find nurses at home. 

Nurses at home keep kids:

  1. Safe
  2. Healthier
  3. Out of the hospital
  4. Attending school
  5. Being in the community

If you want to learn more, email manursingcampaign@gmail.com.

The Human Service Workforce Crisis in Massachusetts

author:

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

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