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:
- Out of the hospital
- Attending school
- Being in the community
If you want to learn more, email email@example.com.
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:
- 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.
- 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.
- 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:
- 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.
- 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.
- 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.
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:
- 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.
- 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.
- 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.
- 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:
- 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.
- 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.
- 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!
- 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.
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 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?
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.
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.
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
Who Will Care? The Workforce Crisis
The Caring Force
Boston Herald: Opinion Workforce Crisis Threatens Community
Chicago Tribune: Article– Care Worker Shortage
Autistic people should be treated fairly at the doctor’s office. As an autistic adult myself, I’ve been treated well by some doctors and badly by others. Here are some tips for doctors, nurses, and other medical workers who work with autistic adults.
- I’m an adult and should be treated like one. That means taking me seriously when I tell you how I’m feeling or what I need.
- Sometimes the world around us can be really overwhelming. Things can be too noisy, too bright, or too rough.
- Autistic people don’t all look or sound the same. We can be of any race, gender, age, or background.
- Many autistic people like to be called autistic people, including me. That’s because we see it as an important part of ourselves. Don’t call me a “person with autism.” If you’d like to learn more, you can read this article about autism and language by Kate Ryan.
- Some people can’t speak, but they can still talk to you in other ways. These ways include computers, tablets, letter boards, and other kinds of assistive technology. I do speak myself, but I know people who don’t.
- You may need to break things down to make them more understandable. I don’t have a hard time with medical language, but some people do.
- Autistic people still care about others, even though it may be hard for them to show it. There’s a difference between feeling something and being able to express it.
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.
- 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.
- 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.
- Conservators, rep payees, and joint bank accounts can help manage money.
- 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
Reversing a Guardianship Agreement
The Arc- Guardianship and Alternatives