The Connection: Issue IX

Issue IX - September 19, 2022

Fall Issue

Dear Members, Families, and Friends,

September is a time for change and transition in seasons, in the world around us, and in oneself. For many, it is the start of a new school year or the first year of transition from high school to college. It may also be the first time that one leaves school. Transitions of any kind can be stressful, which is why it is important to take the time and care that you need for yourself during this time. Below, we have links to guides for your mental health and well-being to help keep you informed of self-care practices.

This month we also bring you a member family story from the Luca family, whose daughter, Bryn, raised interest and funds to support the purchase of a sensory wall for their local school. This family is very excited to share their school journey with you.

It is also Suicide Prevention Awareness Month—the 988 lifeline is now live across the nation, giving people 24/7 access to counseling by phone, text, and online.

As always, we are bringing news relevant to you, our members, about dental providers, your voting rights, webinars you may have missed, information on housing, and upcoming conferences. We hope that you find this newsletter insightful and informative.

Sincerely,

Jess and Carey

Jessica Colon

Regional Director - Eastern Region

Carey Peters

Regional Director - Western Region

Member Story

Above: Brynley Luca standing next to a part of the sensory path at Unadilla Valley Central School

Sawyer Luca and his sister, Brynley, are neurodivergent siblings who attend the Unadilla Valley Central School in New Berlin, New York. Sawyer, who has autism, and Bryn, who has ADHD, both know what it is like to struggle to maintain attention in everyday settings, but especially at school. Sawyer has trouble keeping his attention and becomes distracted easily when he is required to sit for long periods of time or when his attention is demanded for long tasks. Bryn can empathize with her brother, as she too struggles to stay on task. She excelled, however, when she set out to earn her Girl Scout Silver Award.

As part of earning her Girl Scout Silver Award, Bryn was tasked to recognize a need in her community and create a solution that would lead to lasting change. This project must build a Girl Scout's skill and create connections within the community; it is also a project that requires a minimum of 50 hours dedicated toward identifying an issue and taking action to implement a solution. The idea of creating a sensory path was important for the health and well-being of her brother, herself, and those around them. To get the project started, Bryn met with the school principal and janitors. With their initial approval, the idea was put in front of the school board; from there, she met with occupational and physical therapists to determine the best sensory path for the school. Through fundraising, Bryn was able to purchase a high-quality and long-lasting sensory path from The Sensory Path for the school. Finally, she was able to install it with the help of a fellow Girl Scout.

“Everyone was really excited, and we received so many "thank-you's" from teachers, therapists, and other kids!” said mom, Amy Luca.

Both Sawyer and Bryn are making big transitions in school this year. Bryn is going into her freshman year of high school and is very excited to be going back to school. Sawyer is a little more apprehensive although he is doing really well in school. This year, he is moving into a new classroom and will have a new teacher, but his classmates will stay the same. Sawyer and his teacher hope to push him a little more to maintain and reach his goals, which include occupational therapy and working on his hand-to-hand coordination in writing. We wish Sawyer, Bryn, and the rest of the family all the best going into the new school year. Thank you, Luca family, for sharing your story!

At left: Sawyer (back, left) and his sister, Bryn (back, right). Also in this photo are brother Zach (front, left), and mom, Amy Luca (front, right).

What is a Sensory Path?

A sensory path is an interactive pathway that engages children in play, movement, and learning while actively maintaining the child's attention. Sensory paths can be found in public schools and in libraries, but they can also be found outdoors and in play areas. Like the one at the Unadilla Valley school, they can be created with decals placed on walls and on the floor of a hallway. Sensory paths can improve spatial recognition and self awareness, and stimulate a child's senses.

This story received attention in April from Channel 12 News shortly after the path was installed. You can watch the featurette online at the link below!

Sister of STC Recipient Featured on WBNG

Chenango County school, eighth grader team up to install ...

NEW BERLIN (WBNG) - Behind the walls of Unadilla Valley Elementary School, a new concept has been added to a hallway. "So I thought that we should have a way to kind of you know get our energy out," said Brynley Luca, the eighth grader behind the ...

Read more
www.wbng.com

Health and Safety News

Suicide Prevention Awareness Month

You are not alone.

September recognizes Suicide Prevention Awareness Month; it is a time to reflect on the mental health of oneself, loved ones, and family members. Moreover, it is a time to share stories of mental health and suicide and to recognize an often stigmatized and taboo subject.

According to the CDC, adults with a disability experience mental health distress nearly five-times more than those adults without a disability. Mental distress can further limit the functions of a person beyond their disability and can include poor health and behavior, chronic disease, and an increased use of health services, amongst other problems. It is always best to talk about one's mental health with your care coordinator, especially if you are experiencing stress. This way, you can get the help that you need and avert a potential mental health crisis.

Common signs of distress include the following:

Feelings of anger, sadness, numbness, or frustration
Changes in appetite and activity levels
Difficulty concentrating and making decisions
Difficulty sleeping
Physical reactions, such as headaches, body aches and pains, and skin rashes
Chronic health problems that suddenly worsen
An increased use of alcohol or other drugs

How can I prepare for a mental health crisis?

Have the number available for your care coordinator, a crisis line, therapist or physician, someplace visible in your home
Keep the number of a trusted friend or family member nearby when you are experiencing a crisis
988 is a national line available to everyone 24/7
Have the address to a local crisis clinic or emergency room written in a convenient location
Find out if a psychiatric advance directive (PAD) is right for you
And as always...reach out to your care manager if you have questions!

During the month of September, advocates for disability and mental health, family members and loved ones, use the hashtag #Together4MH (Together For Mental Health) to promote mental health awareness and personal stories. Remember to use this hashtag if you share your story online.

988 is LIVE across the nation!

If you or someone you know is experiencing a mental health crisis, 988 is available 24-hours, seven days a week. You can call or text 988 at any time to speak with a crisis counselor, who will help you when you need it most.

Visit the 988 Lifeline

Have You Asked Yourself How You Are Feeling Today?

Whether you are transitioning into a new year of school, out of school, or into a new program, transitions of any kind can be the cause of distress. This is why it is important to check-in with yourself as you navigate new grounds. If you are having trouble understanding or expressing your feelings; if you are grieving, lonely, angered, or stressed; understanding how you are feeling is important to your mental health and can help you to maintain your physical health and overall sense of well-being.

Common feelings of distress include: fear, anger, frustration, sadness, loneliness, worry, and grief, amongst others. To alleviate or understand these feelings, consider implementing the following wellness strategies into your daily routine to dispel feelings of distress:

Taking a walk
Journaling
Meditation or yoga
Breathing techniques
Getting out into nature

The CDC offers a guide to help people know what they are feeling and provides helpful resources that one can use to learn coping techniques and ways to express feelings. You can visit this guide at the link below.

How Right Now

Member and Family Support

School Transition

It is that time of year again when school starts and preparation for the school year has begun. When enrolled into OPWDD services it is important to remember that planning for the transition from school services to adult services should begin when the student is 15 years old, with the student's goals identified on his/her Individual Educational Program (IEP). This discussion should be had on whether the student wants to stay in school until the completion of the year they turn 21 or graduate before that time. Regardless of what is elected, the student interested in OPWDD adult supports should begin working with OPWDD at least three years prior to completing their educational program. To be able to work together, schools need to get signed consent forms from the student's family in order to share records with OWPDD or to tell OPWDD about students who may be eligible for OPWDD services. If this has not been completed, please reach out to your care manager for support in ensuring this is accomplished and both the student's school team, family, and current services providers are all on the same page moving forward.

Below is a helpful breakdown of things you can do to ensure your student is prepared to start this next year’s journey.

Be Sure Agreed-Upon Accommodations are in Place

Review your child's current IEP or 504 plan. Before heading back to school, check in with your child's team, care manager, or guidance counselor. Double check on critical accommodations and be sure that any agreed-upon supports are ready to go. If there are issues, it's better to know about them in advance, and there's a good chance that small problems can be addressed before your child goes to school.

Connect Personally with Your Child's Teacher and Therapists

If you can, set up a time before school starts to meet and communicate with your child's staff. Provide them with information about your child's particular strengths and challenges, but be careful not to overload school staff. Most importantly, let everyone know that you are available to talk, willing to consider options, and eager to be included in your child's educational experience.

Establish an Easy and Reliable Communication Checklist

You want to know how things are going so you can talk with your child about the day and to address issues before they become a real problem. The easiest way to do this is to provide a quick checklist in a binder that goes back and forth every day. Ask for quick yes/no or short-answer questions that the teacher or aide can answer while your child gets ready to go home.

Provide Tools to Assist Teachers and Staff to Help Your Child

You are more knowledgeable about how to best help your child stay calm and focused, manage difficult transitions, or interact with peers. If you have already developed great ways to help your child manage behaviors at school, share them with your child's new teacher and/or staff.

Get and Preview Transportation Information Ahead of Time

How will your child get to school? When and how will they catch the van or bus? Who is driving? What's the route? How long does the trip take? Where do they catch transportation to get home? When does the bus or van arrive, and where will you pick your child up? All of these questions should be answered before the first day of school. Connect with the person or people who will be driving your child, so you can provide them with any important information they need concerning your child's needs. Before school starts, drive the bus route with your child and talk through the process they'll go through to get on and off the bus, to class, and home again.

Collect Information About Extracurricular Options and Events

It may be up to you to get on the right lists, pick up fliers and brochures, check bulletin boards, and make connections on your child's behalf. If you have concerns about whether or how your child can be included in a particular program, email or call the contact person and ask. There's a good chance that they can accommodate your child's needs. You may even be able to enroll your child in an appropriate after-school activity that they are open to participating in before the school year begins.

Prep Your Child's New Clothes, Shoes, and Other Items

Many neurodivergent children have a tough time saying goodbye to old items and an equally hard time getting used to new things. Clothes and shoes can create sensory issues, and emotional attachments can be hard to break. As early as possible (at least a few weeks before school starts), begin the process of sorting through older items and buying any necessary clothes and backpacks for the upcoming school year.

Create a "New School Year" Calendar and Schedule for Your Child

Most people are less anxious when they know what to expect; children with a disability are no exception. In fact, many neurodivergent children need schedules to lower anxiety and prepare for transitions. While some schools do provide schedules to kids, many do not. Depending on your child's age and ability, you'll need to create daily schedules and calendars to help your child acclimate to the new year and look ahead to events, such as tests, holidays, and vacations.

Help Your Child Get a Sneak Peak and Address Potential Challenges Ahead of Time

Whether your child is moving to a new school or moving from elementary to middle school, the more your child knows about what's coming next, the better they'll be able to handle their anxiety. Ask your child's teacher for a few minutes before school starts to meet with your child, show them where they'll be sitting, explain where they'll put their coat and lunch, visit their locker and gymnasium. If possible, walk through your child's day with them during an Open House. This will give your child an idea of where they'll be going, what they'll be doing, when they'll be eating lunch, and so on. It will also help you attend to any of your child's need ahead of time.

For additional support and ongoing information Parent to Parent of New York State has a calendar of events that cover topics related to school education. View their calendar and sign up for events here.

Finding A Dental Provider

Finding a dental provider that will work with people who have intellectual and developmental disabilities (I/DD) is one of the most challenging difficulties faced by parents and caregivers. At Southern Tier Connect, we’re working to change that.

We recently sent out an informational postcard to over 150 dental providers across New York state, with the request that they consider joining our provider network. We’re seeking to connect with dental providers that have experience with the I/DD population, as well as those that are willing to learn ways to better care for our members. It is our hope that we can build a network of quality providers that are willing to learn and grow with us so that our members can have access to dental providers that understand their unique needs.

Did you know?

People with intellectual and developmental disabilities are at a higher risk for certain oral health problems, even when they do have well-established dental care. These problems can include the following:

Tooth decay and Periodontal (gum) disease occurs more often and at a younger age in people with developmental disabilities. Difficulty performing effective brushing and flossing may be an obstacle to successful treatment and outcomes.
Malocclusion is not uncommon for people with developmental disabilities, which can make chewing and speaking difficult and increase the risk of periodontal (gum) disease, dental caries, and oral trauma.
Damaging oral habits such as teeth grinding and clenching, food pouching, mouth breathing, and tongue thrusting can be a problem for people with developmental disabilities.
Oral malformations may cause enamel defects, high lip lines with dry gums, and variations in the number, size, and shape of teeth.
Delayed tooth eruption may occur in children with developmental disabilities, such as Down Syndrome. Children may not get their first baby tooth until they are 2 years old.
Trauma and injury to the mouth from falls or accidents may occur in people with seizure disorders or cerebral palsy.

To maintain good oral health, people with disabilities often benefit from a special approach to dental care. Different abilities means that a different perspective may be needed but, unfortunately, it can be difficult to find providers that understand this. Some of the considerations to be made can include the following:

Cognitive abilities and communication needs will vary from person to person and may have an impact on how individuals understand proper oral hygiene. Talk with the patient and their caregivers about how the patient's abilities might affect oral health care; be receptive to their thoughts and ideas on how to make the experience a success; and ensure that patients understand the care instructions that you provide before they leave your office.
Behavioral or sensory disorders may indicate a benefit from environmental adaptations. Try creating a sensory-friendly and calming environment by removing bright lights and loud noises, adding calming music, or offering a weighted blanket to help prevent sensory overload and anxiety.
Limitations with mobility could mean that additional assistance is needed to transfer a patient to the dental chair or that accommodations may be needed to allow a patient to remain in their own chair for an exam.
Neuromuscular problems can affect patients with disabilities by presenting with persistently rigid or loose chewing muscles, or have drooling, gagging, and swallowing problems that can complicate oral care. Be sure to ask questions and collaborate with therapists, if needed, to identify the best approach for care.
Gastroesophageal reflux sometimes affects people with central nervous system disorders, such as cerebral palsy. Because of this, teeth may be very sensitive or have excessive erosion.

Dental professionals need to be aware of the unique circumstances – behavioral, physical, and cognitive – that a patient may have. A willingness to learn appropriate skills and techniques to meet the oral health needs of people with developmental disabilities will help to provide quality care.

If you are a dental or medical provider that is interested in partnering with Southern Tier Connect, check out our Network Provider Agreement on our website at southerntierconnect.com/network or reach out to our Population Health Coordinator, Emily Jackson, at jacksone@southerntierconnect.org or 607-376-7526 ext. 354 for more information.

If any members, parents, or caregivers would like to recommend a dental or medical provider, please let your care manager know or reach out to Emily Jackson. We would love any opportunity to connect with well-respected providers!

Know Your Rights: Voting

YOU have the right to vote,

but do you know your voting rights?

You have the right to participate in the political process: You can vote by mail, in person, or online. Talk to your care manager for information on how to register to vote in your area and where to find your nearest polling station.

Research candidates: Ask about alternative formats for literature such as pamphlets and political guides about candidates and parties to help inform your decision.

Accessible voting stations are required by federal law: You can check with your local elections office if accessible polling stations are available near you.

You have the right to ask for an assistant when voting: When you go to your nearest polling station, you have the right to bring someone with you to help you navigate the voting process. This can be a trusted friend, family member, care provider, or poll worker. Remember: this person does not have the right to tell you whom you should vote for or influence your choices.

Your vote belongs to you and not to anyone else: Your vote is personal and private, which means that no one has the right to know who you voted for or why.

The National Disabilities Rights Network has published an extensive webpage with resources for all of your voting needs and questions on their website. For more information, visit their webpage below. As always, you can reach out to your care coordinator for more information about your right to vote and the voting process.

Voting Rights

New Webinar Online Now!

HUD and Section 8 Housing Informational Webinar

On August 24, 2022, we partnered with Delaware Opportunities

to bring you an informational webinar

The U.S Department of Housing and Urban Development provides Section 8 housing, a rental subsidy program, designed to help low-income, single people and families pay their rent, thus allowing them to live in safe, sanitary, and healthy conditions, in an environment and community that is right for them. Accessing information and understanding Section 8 and HUD can be confusing, which is why we are providing you with this information webinar!

Last month, we were joined by Charles Bailey and Melanie Watson from Delaware Opportunities to talk about Section 8 and public housing challenges, as well as other state and federal initiatives that can help our members, no matter where you live!

A recording of this webinar is available for you to watch at the link below.

Webinar Link

Leadership Conference

SOTA Student Leadership Conference

Are you interested in learning more about options for college for people with an intellectual or developmental disability? There are some exciting events happening at Syracuse University that we think you should join or encourage your kids, students, and friends to attend! More below:

Inclusive College Fair: On October 18^th from 5:30pm-7:30pm we are having a FREE College Fair at the Sheraton! Students can speak with different programs from around the country. We will also have tours around SU after the fair.

For more information on the Inclusive College Fair, click the link: Inclusive College Fair

Registration is required.

Student Leadership Conference: On October 19th-20^th Syracuse University will hold an in-person conference. Registration is $50 for students. This is an opportunity for students currently in inclusive college programs or planning to attend college to connect with each others and share their experiences. At this event, there will be presentations from your peers about living independently, taking college classes, relationships, advocacy, and so much more!

For more information on the Student Leadership Conference, click the link: Student Leadership Conference