Do you need help at home?

author:

a person helping an older personAs a future public health worker, I want to learn more about programs that help disabled people. One of them is Adult Foster Care.

Who is eligible?

  • A person with a disability
  • Must be 16 years of age or older.
  • Can not live alone
  • Must need daily assistance with one or more activities of daily living for example: bathing, dressing or eating.
  • Must be approved by a doctor.

Do you have to pay?

NO!
The caregiver will receive tax-free money.
For more information visit Massachusetts Council for Adult Foster Care.

Using Tablets to Talk!

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Picture of school-aged girl sitting at table using tablet.Communication

There are some children who have difficulty talking. Using a tablet can help.  Finding the right tablet for each child is not easy. A specialist, called a Speech Language Pathologist (SLP), is like a doctor. A SLP meets with the child and watches the child playing. The SLP also speaks to the child. The SLP enables the child to play with different tablets. The purpose is to see which tablet the child likes to use the most. The SLP then asks the child to do a few tasks. The difficulty of the task levels go up to match the level of the child’s understanding. The
SLP has questions for parents as well. The SLP wants to understand how parents and their children talk to each other at home.
Once the SLP finishes meeting with the child, the SLP will write a report. Parents will receive a copy. If parents want to get a tablet for their child, parents and the SLP will work with each other for at least a month. They watch the child using the tablet at school, and then at home. The purpose is to see if the new tablet is really helpful for the child. Parents will take some data to share with the SLP.
Once a child has the right matching tablet, it is important for the parents to know how to use it. Training for parents is important. Parents need to know how to help their children. Many are afraid of allowing their children to use tablets. They worry their children will become dependent on a tablet and not vocalize any more.
For more information, contact Massachusetts Advocates for Children.

Epilepsy

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I am a family member of a brother with epilepsy. I am not from the U. S. I have always wondered why there isn’t any help for people with epilepsy in my Image of a man’s face with lighting on his forehead country. I thought once people were found to be disabled or epileptic, they are seen as different. I thought there is nothing to be done for them.

Once in the U.S, I learned people with epilepsy have places to go. I learned help is given to them correctly. I plan on learning best training ways and ideas. I will apply them in my home country. I want to study what local and state groups offer. I want to find out how better services can be given to people with epilepsy.

I am now an agent who has worked in the disability field for a while. I came to realize there are gaps in the ways disabilities are seen. I decided to do more research to understand the difference in epilepsy aids and healing. I will then present my thoughts and next steps.

For more information and resources: Epilepsy Fact Sheet

What is Person-Centered Planning?

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circle of people huddled closely together like a team working togetherWhat is it?

Person-centered planning is a tool that can help you move forward with your dreams. It is about what you want to be doing in your life.  It is also about what is most important to you.  Imagine a meeting in which everyone is talking about what you are good at doing.  Wouldn’t that be fun!

How is it done?

There are many ways to do person-centered planning. The first part is identifying what your goals are for the future. For example, you may want to live on your own, get married, and have a job you enjoy. Another important part is inviting people in your life to be part of the planning. You may want to invite friends or family members; such as parents, cousins, grandparents etc. You also might invite neighbors or people from groups you are part of, such as church or other clubs. This is like having your own team. The people on your team will support you.  For example, your neighbor may be in the type of work you want to do.  This neighbor may help you meet people at their workplace.
Here are some commonly used tools to carry out person-centered planning:

  • MAPS
  • PATH
  • Whole Life Planning
  • Personal Futures Planning.

Why is it important?

It is important because all planning about your life should be led by you! You know best what you want to be doing.  It helps to have a team of people who care about you.  It is a great tool that has helped many people identify what they want to be doing and how to do it.
For information please visit: Bethmount.org

Why Visit a Museum?

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kids touching baby head sculpturePersons with disabilities can:

  • Learn the past
  • Talk about big and small issues
  • Share ideas
  • Listen to others
  • Make things to share your ideas

The community gains:

  • A place for everyone
  • A place for everyone to learn new things together
  • A place to share ideas

I lead an organization called Our Space Our Place, Inc., an after school program for youth who are blind. We visit many museums. Our students learn about different cultures. They write stories and poems. They talk about the stories in art. They talk about their favorite paintings and sculptures with their families and friends. Taking a tour or making art opens new worlds.
For more information about museum programs for people with disabilities contact:

  • Museum of Fine Arts
    • Hannah Goodwin
    • Phone: 617-369-3189
    • TTY: 617-369-3395 or
    • Email: access@mfa.org

Nature Play Blog

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two boys playing on stonesWhat is Nature Play?  Nature Play is going outside to play and explore.  Kids spend more time indoors than ever before. Kids who play outside more often sleep better.  Those who play outside are sick less than those who stay inside.

Nature Play helps kids be happy and creative.  It shows how to solve problems and deal with stress.

Nature play uses the colors, textures, sights, and smells of the outdoors. There are many ways to make your own areas in your backyard! As a mom of five children, here are some cheap ideas that we have around:

  • trees, flowers, and plants;
  • water;
  • sand and stones;
  • seek and finds;
  • music; and
  • bug hotels.

For more information, please see: What is Nature Play?

Learning How to Cope

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Kayak on a lakeWhat do caregivers do?

Caregivers are special people. They give so that others can be happy, healthy and have a better quality of life. Caring and giving can fill a person’s soul. It is also very hard work! Those who are paid workers get very little money for their work but still give all they can.

Caring for a loved one may mean there is no pay for work done. They give care 24 hours a day, 7 days a week, 365 days a year with little to no breaks. How can a caregiver practice self-care?

How can they deal with stress?

This blog will give some simple, low-cost ways to cope with stress brought on by daily caregiving. Try to make a list of coping skills so that in times of stress you will know what to do. Make sure your list is easy to access, like on the side of the refrigerator. This is a list of ways to help deal with stress:

  • 5 minute self-guided meditation This is a link to a 5 minute self-guided meditation. Five minutes of meditation daily can help to reduce your stress levels!
  • Deep breathing can be done alone or with the self-guided meditation. Slowly take a deep breath in through your nose and slowly let the breath out throw your mouth.
  • Slowly sipping a cup of water may not seem like much. But it helps slow your heart rate and can help reduce anxiety in the moment.
  • Music and dancing can help you release stress. Music can change your mood and how you feel.
  • If you have time and can afford respite, it should be planned. Even one trip that is scheduled per year can give you hope and something to look forward to.
  • Chew gum. It can lessen anxiety and increase your ability to focus!
  • Exercise! Just 30 minutes a day can improve your health!
  • Schedule your coping skills into your day! Just like you do for the one you care for. It may seem simple, but scheduling self-care will ensure that you get self-care!

For more information, you can also visit:

Using an iPad and double switch to make choices

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“IPad and double switch device

IPad and double switch device

I am the mother of a child who has a developmental disability. My daughter uses her iPad and switch to make choices. She can’t talk. She understands well many things. At times it can be hard for her to let people know what she needs or wants. That is why she started using her iPad and switch. She started about 2-3 years ago. Her iPad uses a program called “Go Talk Now”. This program helps in creating and recording option sets for her to choose from.

What are the steps?

The switch connects to the iPad to the program “Go talk now”. Then you have to open one of the option sets. For the first steps my daughter needs help. Then, using her hands, she pushes the left side of the switch to listen to her options. She pushes the right side to choose the option she wants.

The iPad and switch to play games:

The switch and iPad can be used to pay games, read stories and play music. There are many apps you can use with a switch: iPad and switch to play games

In summary:

The iPad and switch can be used to communicate wants and needs. They can also be used to play games, listen to music and read stories. For my daughter this has been great in giving her a voice.

Autism Caregiver Support

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Woman meditationing in a wheat field

Stress? Autism? Balance? Time.

Is it the techniques we choose? Or, is it the time it takes?

Is it possible? As a mom? To have balance? To manage stress?

As a mom to three children under 7, I am not sure. As a mom to a minimally verbal child with autism, I am really not sure. Things can get crazy. It’s difficult to step away from the stress. As caregivers, it is important that we care for ourselves. Easier said than done. When? How?

How can we take care of ourselves?

I think we all know that we have to do this. It’s the “how” that we all wonder about. How, exactly, do I care for a disabled child and take care of myself?
There are many studies that tell us that stress levels are high in moms of kids with autism. Still more tell us that if we manage the stress, we will be better moms. Caring for ourselves will help us care for others better. Okay. The question becomes how?

It’s about time…

A recent study at Vanderbilt University points to two techniques to manage stress. The first is mindfulness training. The second teaches a more cognitive approach. Both are led by peers. All well and good. I would love to try it. But, how are these people finding time? How could I possibly go? Researchers and policy makers are missing the point. We know how to care for ourselves. What we need is skilled, qualified care for our children. We cannot hire the babysitter down the street. The people that we hire require certain skills. Expensive, hard to find skills.

Do Researchers and Policy-Makers get it?

When will researchers and policy makers get it? Is it possible that just simply having time away has more of an effect on stress than the actual study intervention? I think it could. Imagine if an employer tried to work you like this? They can’t. There are Federal and State laws to protect employees. Not family caregivers.

    • 85% of 43 million family caregivers in the U.S. right now don’t receive any respite services.
      • National Alliance for Caregiving (NAC) and AARP Public Policy Institute, Caregiving in the US, 2015.
    • 4/10 adults in the U.S. care for a family member with severe health issues
      • PEW Research Center, June 20, 2013.
    • Care for the caregivers = More successful children. Happy healthy caregivers. Marriages. Siblings. All work to support the affected child. If the family functions well, the affected child will be better supported. A better supported child is more likely to succeed.

What can we do?

High Blood Sugar

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Person testing their blood

As a future health worker, I am worried about how people with disabilities are getting sick with diabetes.

What is diabetes?

• Diabetes is a disease in which blood sugar is too high.

What can be done to prevent diabetes in people with disabilities?

  1. Have your blood tested.
  2. Be active every day.
  3. Eat healthy food.
  4. Use portion size.
  5. Have a healthy weight.
  6. Use medicine in a good manner.
  7. Do not smoke.
  8. Use sun protection.
  9. Improve your health literacy.

For more information visit these websites.

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