Action Alert: Ask Representatives to Stop Medicaid Cuts

Take-Action-2-300x212

Action Alert: Proposed Changes to Medicaid Will Cut Funding

Call Your Representatives Today!

 

Congress is moving quickly to repeal the Affordable Care Act (ACA or Obamacare) and replace it with the American Health Care Act, or AHCA. This bill will make drastic cuts to the Medicaid program affecting people with autism who are currently getting Medicaid, including those on Innovations home and community based waiver, those on the waiting list, and those who may need these services in the future.

The health-care bill is being debated now. The House of Representatives is moving quickly to push for a vote by the end of March. The Senate is planning to vote on the House bill before the mid-April recess.

We urgently need you to call your senators and representatives today and explain why the ACA and Medicaid are essential to people with disabilities and their families. People’s health, services, and lives are at stake.

Message: Do not cut and cap Medicaid. As it is currently written, the AHCA will cut an estimated $800 billion from Medicaid over the next 10 years.

  • Already lengthy waiting lists for disability waiver services will grow to record levels, and services may be severely limited. General Assembly legislators are moving to reduce NC waiting lists; these changes at the federal level could stop this from happening
  • If funds become scarcer, states may decide to stop providing personal care, mental health, prescription drugs, and rehabilitative services.
  • People with disabilities who require Medicaid services to live in their own homes, hold jobs, and participate in communities may be without those supports. Costs could shift to individuals or family members.
  • Coverage for intensive behavior services (including ABA) for children under Medicaid’s EPSDT could end.
  • Schools may no longer be reimbursed for services. This would only increase the burden on schools.
  • For additional information, see the Medicaid fact sheet developed by the Consortium for Citizens with Disabilities.

Take 5 minutes to call your representatives now!

Let them know:

  • I am your constituent.
  • I am a person with a disability, or I am a family member of someone with a disability, or I am a professional in the disability field.
  • I care deeply about health care, including Medicaid.
  • Briefly share your personal story; that is what will make a difference.
  • North Carolina is already using per-capita funding models and has 8-year waiting lists for many autism services.
  • Do not allow per-capita caps and cuts to Medicaid to be part of an ACA replacement.

Call now:

Sen. Richard Burr 202-224-3154

Sen. Thom Tillis 202-224-6342

NC congressional delegation (find which US House member represents you here):

  • 1st District: George “G.K.” Butterfield Jr. 202-225-3101
  • 2nd District: George Holding 202-225-3032
  • 3rd District: Walter Jones Jr. 202-225-3415
  • 4th District: David Price 202-225-1784
  • 5th District: Virginia Foxx 202-225-2071
  • 6th District: Mark Walker 202-225-3065
  • 7th District: David Rouzer 202-225-2731
  • 8th District: Richard Hudson 202-225-3715
  • 9th District: Robert Pittenger 202-225-1976
  • 10th District: Patrick McHenry 202-225-2576
  • 11th District: Mark Meadows 202-225-6401
  • 12th District: Alma Adams 202-225-1510
  • 13th District: Tedd Budd 202-225-4531

 

To learn more about how to advocate with your legislators, see our website.

Every call you make counts! Literally. Staff and representatives are noting the issues and counting calls.

Thank you for taking action and making calls today!

 

Craven County Chapter Leader Recognized

Kim Hoffman award 2

Kim Hoffman has selflessly given hours and hours of service as the Leader of the ASNC Craven County Chapter since January 2015. With the help of other dedicated volunteers, she has touched so many lives through the Chapter, organizing dozens of educational events, social activities, and awareness efforts in her community. Kim’s passion and energy never cease to amaze us at ASNC!

We are not the only ones who notice her dedication. On March 2, Kim was honored at the “I Love That Lady” gala in New Bern. She was among seven women who were named finalists after being nominated by members of their community. Kim was one of the runner-ups and won $1,000 for the Craven County Chapter.

“It was well-deserved recognition for Kim and all the work she has done in Craven County to bring awareness to the community and help for the parents and families in the area,” said Terry Fetzer, Regional Chapter Coordinator. “The room was packed with wonderful ladies, and this was really a special highlight.”

Kim Hoffman awardKim said it truly was a wonderful evening. “I could not stop smiling,” she said. “Just to be honored … and to get this kind of recognition never crossed my mind. I am honored and blessed to serve this chapter 100 percent.”

The Chapter has big plans for its award money. “We will continue to keep our chapter busy with workshops and sensory-friendly events,” Kim said. “We will continue to be a support system for our families and a resource for them so they don’t feel alone. We are always encouraging new things for our kids to push them with their parents help and expose them to new life experiences they never thought were possible.”

Kim’s son Maxwell, who was diagnosed with autism when he was 4, is 11 now and “doing fantastic,” she said. “He is my colorful gift from God.”

“I know I’m the Chapter leader, but this Chapter is for me as well. I can only share my experiences with other parents in hopes that they know that with the right resources, our kids are brilliant and smart. I would never change a thing about this Chapter.”

 

For information on how you can become involved with one of our 50+ Chapters around the state, click here. No chapter in your area? ASNC works with local families to start new groups. Contact Marty Kellogg at mkellogg@autismsociety-nc.org for more information.

How to Help as a Grandparent

Terry and grandson

This article was contributed by Terry Fetzer, who is an Autism Resource Specialist in the Eastern region and has a son and a grandson with autism.

Most of us remember what a miracle it was when we became a parent of a child. The years pass, and now your child is an adult having a child, and the memories flood back. As an excited grandparent, you celebrate the birth of your grandchild with the parents. As the child grows, differences begin to show up in the development of communication, joint attention, playing with objects, and responding to others. The usual milestones are not being met, and the parents seek help. After evaluations, your grandchild receives a diagnosis: Autism Spectrum Disorder. You’re faced with the reality that your precious grandchild has special needs. The emotional rollercoaster begins to takes over. You go through a grieving period as you begin to process how this will affect the lives of your child and their spouse. The love you feel is strong, and they will need you now more than ever. Your heart aches, wondering how they will manage; you know how much time and energy it has taken over the years to raise your own children. The challenge as a grandparent of a child on the autism spectrum begins to sink in. What does this really mean? You are afraid that you will not be able to keep up with the demands that will come up day after day. You take a deep breath! You decide you will have the courage to continue, one day at a time. With strength and support from each other, your family begins the journey.

You can help your child

Love your child and try to listen before talking. Be kind and allow your son or daughter to ask for help instead of jumping in and trying to fix things in a way you think is best. This is their child, and as adults, they need your love, support, and guidance, not your control over their lives. Respect their decisions even you would do something different.

Understand that it will take some time to establish a routine that will work for the family. Try to use the strategies and schedules that they have worked on to maintain consistency. It is OK to share suggestions and let them know if you do not understand something, but please try first to follow their lead. They will be tired, and you being on board with their routine will help with transitions and their anxiety. This helps the whole family.

Be helpful and let them know when you are available to go to the store, fix a meal, care for the other children, and help around the house. Even taking the kids for an hour or so can provide a break they will appreciate very much.

Keep encouraging them and let them know that you are cheering them on. Use praise to lift them up. Be positive look for the progress they are making each day.

What I have learned over the years

Educate yourself by finding out about the disability. Ask your children to share resources they have found. Find local resources and share the information with your children. Share articles and news you have heard to show you are actively wanting to understand your grandchild.

If possible and okay with the parents, it is helpful to accompany your grandchildren to meetings, doctor visits, therapy sessions, etc., so you can talk about how things are going and ask questions if you do not understand. The more you learn, the better support you can be for the family.

Take care of yourself and balance your time with your husband and your extended family. Share your love and attention with all of your grandchildren. Try not to favor or ignore the one with the disability. Love them all as equally as you can. Every family member is a vital part of the support system for the family. You need each other.

Try to connect with support groups and other people in your community who have grandchildren with a disability. Spend some time together to share experiences. It is comforting to know you are not alone on the journey with your children and grandchildren. You also can learn from each other and be a positive support during the good and difficult times.

How to support your grandchild

Love your grandchild as a person first, no matter what. Accept them for who they are. Meet them where they are. Learn what they like and play with them. Enjoy what time you have together.

When they get upset, try to redirect them. Keep language clear, concise, and to a minimum. Give them time to calm down and get themselves together as much as possible. Don’t take personally anything that is said in an explosive moment. Always see this as a symptom, not who they really are as a person.

Help them learn to trust you and feel you are always a safe person to whom they can turn whenever they need help. Give them support and help in a way that is loving, kind, and consistent.

Remember, our grandchildren are unique individuals. They need and deserve the best life possible. Be a positive influence and let them know your love grows with them each and every day.

Terry Fetzer can be reached at tfetzer@autismsociety-nc.org or 252-670-5275.

Understanding Autism with the Hula Hoop Analogy

hula-hoopsThis article was contributed by Nancy Popkin, Autism Resource Specialist in the Charlotte region and mom to a son with autism.

One of the keys to parenting, working with, or just hanging out with an individual with autism is to truly understand the core characteristics of autism. Applying these core characteristics enhances our understanding of why our child, student, employee, or friend might do some of the things they do. In doing this, we are able to anticipate challenges, develop strategies, and in some cases, find those extra ounces of patience that allow us to support them when challenges arise. Over the years, I have developed something I call “The Hula Hoop Analogy” to help me teach others to understand the individuals with autism in their lives. Not only does this help me explain aspects of autism to others, but it has allowed me to help my son understand himself. Here’s how it goes:

Imagine that every person with autism has an invisible Hula Hoop™ around themselves. They are in the center of the Hula Hoop, and everything inside the Hula Hoop matters to them. Everything outside of Hula Hoop, not so much. And this makes sense, because the root of the word autism is “auto” which means “self.” This is not to say that individuals with autism are selfish, but their perspective of the world is sometimes or often limited to their own perspective. And this helps us understand one of those autism characteristics. Individuals with autism, to varying degrees, struggle with taking the perspective of another. They have difficulty understanding how their actions may affect someone else. And this is because of this invisible Hula Hoop.

This thinking can be applied to help us understand other core characteristics of autism. For instance, we know that individuals with autism benefit greatly by having a visual schedule or visual cues to help them navigate their world. Often though, consideration is not given to the location of the schedule. To be effective, it must be within the invisible Hula Hoop for that individual. This is why, if the schedule for a classroom is in the front of the room for all students to see, the student with autism may not know it applies to them and will not attend to it. The schedule might need to be on their desk or on a notebook. At home, the schedule and visual cues need to be where they will be processed effectively or where the task or activity takes place.

We can apply this analogy to understanding social differences, too. Individuals with autism often do not respond to their name unless you are very close. It is like we need to get in their Hula Hoop to get their attention. At school, if the teacher is talking at the front of the room, often the student with autism will not process what the teacher is saying. The teacher isn’t in the Hula Hoop, so it’s as if what they are saying doesn’t apply to the student. And sometimes, individuals with autism don’t recognize personal space. This may be because they feel like you need to be in their Hula Hoop to interact with them.

The size of the Hula Hoop will vary from one individual to another. It also might expand and contract depending on the individual’s abilities, stress levels, and environment. Individuals with autism often have difficulty processing a lot of information at once. If they are overwhelmed with information (sensory or otherwise), the Hula Hoop will get smaller, and they may not be able to attend to as much information as when they are calm. This is important to know when helping someone manage themselves when they are upset. If the tools and strategies used to help them regain their sense of calm are not in close proximity when the Hula Hoop contracts, it will be harder to get them calm. This is why many of the visual cues and other supports for someone with autism need to be portable and with them at all times.

Not only does the Hula Hoop Analogy apply to physical space, it also applies to temporal space and individuals’ ability to manage time. Imagine the Hula Hoop represents this moment in time. Individuals with autism are most comfortable living in the present. Thinking about the past might be uncomfortable for them and they might resist talking about past events. The exception to this is when reliving past events repeatedly as a way to stim.

But more significantly, this temporal effect has an impact on planning for the future. Individuals with autism are not good at thinking about what might happen in the future and planning accordingly. This affects things like figuring out what jacket to wear or whether to grab an umbrella for later. It affects planning what work to get done now and what to put off for later.

The good news is, with practice we can help an individual with autism expand their invisible Hula Hoop to take in more and more information, include more people, and anticipate what lies ahead. But we need to start this process where they are, within their Hula Hoop. And when issues arise, consider that maybe this invisible Hula Hoop has gotten in the way. That is when we step inside their Hula Hoop, with all the patience we can muster, to guide them into the future.

 

Nancy Popkin can be reached at npopkin@autismsociety-nc.org or 704-894-9678.

Chef Pepper Jack’s Food Drive

jack-food-driveWhen 17-year-old Jack Cullen began to notice people on streets holding signs requesting donations, food, or jobs, he started asking questions. He wanted to understand why they didn’t have food or jobs. He wondered whether they had homes or other belongings. The growing concern that Jack displayed led his Autism Support Professional, Holly, to ask him whether he would like to help people with these kinds of needs. Jack enthusiastically embraced the idea, and together, they began looking for ways that they could serve people whose most basic needs were unmet.

After doing their research, Jack and Holly chose to become involved with the local food bank, but it was in an old warehouse that did not have air conditioning, and the noise from the machinery was very loud. This environment presented a variety of sensory challenges that could have prevented Jack, who has Autism Spectrum Disorder, from becoming involved. But instead of allowing those barriers to limit Jack, Holly helped him find a different approach. Instead of doing work inside the food bank, after food was already collected, Jack worked with Holly on a plan for his own food drive. This allowed him to collect and sort the food in a suitable environment, before delivering it to the food bank.

Together, Holly and Jack created flyers and collection bins for the food drive. Jack named his endeavor Chef Pepper Jack’s Food Drive, based on his favorite game, Skylanders. Holly coached him on how to talk to family, friends, and community members to solicit donations. He passed out flyers and set up collection bins, and it wasn’t long before donations starting coming in! As his box filled, he sorted the donations, loaded the boxes into the car, and, with Holly’s help, took them to the food bank. Jack also sent handwritten thank-you cards to friends and family who had made donations.

So far, Jack has made three trips to the food bank, with his biggest donation weighing in at 120 pounds! Jack’s original goal was to collect 500 pounds, but when asked whether he plans to keep the food drive going, he answered, “Yes! Absolutely!”

The Autism Society of NC provides a variety of community-based services that enable individuals with ASD not only to receive the day-to-day support they need and to gain valuable skills, but also to find and engage in opportunities to become involved in their communities in a meaningful way. Jack’s story is just one example of how ASNC is committed to empowering individuals to connect with others and achieve goals that bring them personal satisfaction and purpose. Learn more here or contact us at 800-442-2762.

’Tis the Season … for Opportunities!

 

Vickie Dieter is an Autism Resource Specialist in the Catawba Valley region and mom to a son with autism.

Many families who have children and other family members with an Autism Spectrum Disorder have a collection of war stories and battle scars (emotional and physical) associated with the holiday season. Children, youth, and adults with autism who already struggle with over-stimulation, change, and disruption are bombarded with a barrage of sights, smells, sounds, schedule changes, and challenging social situations during the holidays. While many families enjoy the holidays and find these sensory and social experiences exciting and pleasurable, they can cause increased anxiety and discomfort for people with ASD. But, as difficult as the season can be, the holidays offer unique learning opportunities for teaching your child coping, social, and academic skills.

The holidays were not pleasant for our child and family, especially during his first six years or so. I remember feeling helpless and desperate to do SOMETHING to make the holidays more tolerable. It helped me when I was able to shift my focus beyond the difficulties associated with the holidays and take a proactive approach to help my son have successful, positive experiences. Focusing my efforts on pinpointing the root of my son’s behaviors and researching strategies to help him cope in difficult situations helped me gain a sense of control. The perception I had of our family as prisoners of our son’s disability changed when the strategies I tried with him began to have positive results. Over time, my son became more and more engaged in holiday activities, and our family has enjoyed many traditions and celebrations with family and friends.

I hope the following ideas will help your child and family share a more meaningful and positive holiday experience:

Use visual images, objects, videos, songs, and foods associated with the holidays to explain abstract concepts and deeper meanings of holiday traditions and religious beliefs.

Use a nativity set to help your child understand the meaning of Christmas.

A dreidel can be used to explain a historical element of Hanukah.

Turkey, corn, and other foods (pictures, real food, or play food) can be used to represent the pilgrims and Native Americans coming together for the first Thanksgiving.

Incorporate the Kinara, a visual symbol of African history and heritage in discussions about Kwanzaa.

Help your child understand what other people are thinking and feeling through the use of social stories, books, and videos.

For example, the characters in Dr. Seuss’ How the Grinch Stole Christmas have exaggerated facial expressions that can make it easier for children to identify the characters’ feelings. When reading this book with your child, help him or her make the connection between the characters’ facial expressions and what they are feeling. Use the context of the story to discuss the reasons that the characters feel happy, sad, angry, afraid, etc. Talk about how the characters’ actions affect the feelings and thoughts of others in the story.

Use your child’s preferred interests to engage him or her in holiday activities.

For example, for a child who has a strong interest in tornados, you might modify The Night Before Christmas story to include a tornado that interferes with Santa’s flight from the North Pole.

If your child has an intense interest in flags, try to engage him or her in a game to match flags to their respective countries. Explore holiday traditions and practices of each country and compare how your family’s traditions and beliefs are alike or different from people in other countries.

Use holiday symbols and images to promote academic skills.

Sort unbreakable ornaments by color, shape, type, or category.

Label holiday items throughout your home with words written on sticky notes or post cards, e.g. Santa, tree, pumpkin, candle, gift, Zawadi, gelt.

Practice addition and subtraction using holiday objects as manipulatives.

Work on sequencing with pictures, objects, stories, etc. Drawing or building a snowman is a fun visual sequencing activity.

Strategies to teach coping skills

Employ strategies that have worked for your child in the past but are no longer necessary under normal circumstances. For example, if your child responded well to the use of visuals but has “outgrown” the need for them, consider trying visual schedules, cues, or gestures again to help him or her understand and prepare for unexpected, unfamiliar, or overwhelming situations.

Coping with sensory overload and changes in routine can be exhausting and stressful for individuals with ASD. Try to pay attention to “warning” signs that your child is feeling tired, anxious, or frustrated and use this opportunity to help him or her learn to ask for a break through the use of visual and verbal prompts, redirection, or calming strategies. Ask your child’s teacher what type of behavior management system is used in the classroom and try to use that familiar system or a modified version in other settings. The Autism Society of North Carolina Bookstore has some great books and videos about using visual supports to help your child recognize and manage his or her feelings and behavior. The Incredible 5 Point Scale is one of my personal favorites.

Learn to recognize when your child has had enough. All of the tricks in the book probably won’t help once your child reaches the dreaded point of no return – parents, you know what I’m talking about.

Happy Holidays!

Contact one of ASNC’s Autism Resource Specialists for additional information and resources. Vickie Dieter can be reached at vdieter@autismsociety-nc.org or 828-256-1566.