The Connection: Issue VII

Issue VII - March 15, 2022

Developmental Disability Awareness Month

Dear Members, Families, and Friends,

It's March, which means that the first official day of Spring is this Sunday! Hooray! The promise of warmer weather is always a great reason to celebrate March, even if here in the Southern Tier of New York, we received six inches of snow this past weekend (cue the sad trombone).

But there are better reasons to celebrate March, one of them being that it's Developmental Disability Awareness Month. From the first to the thirtieth, we've curated special social media posts to promote awareness and advocacy for people with intellectual and developmental disabilities (I/DD). If you don't follow our socials, please take a minute to do so by following the links in the footer of this email. You can also see all of the posts on this page of our website.

Our feature story in this edition of The Connection highlights the incredible life journey of Southern Tier Connect (STC) Member Jimmy Severino. Jimmy spent most of his childhood and young adulthood at Willowbrook, but since moving to Ithaca, where he could get the support he needed, today he is almost completely independent and is living a full, adventurous life. His story is a compelling example of how advocacy, over the years, has helped people with I/DDs get the care they deserve and reach their full potential, and how STC's care management services can continue to help people grow in all stages of life.

Speaking of advocacy, STC has partnered with the six other CCOs as part of a campaign to raise wages for direct support professionals (DSPs). DSPs are facilitators, mentors, and advocates who dedicate their time and talent to supporting the life of another person and helping them make meaningful choices for their future. There is a staffing crisis in this workforce that a higher wage can help remedy. Please take a moment to visit our advocacy page and use our one-click platform to send a message to your legislators and share your DSP story as part of our campaign.

Sincerely,

Jess and Carey

Jessica Colon

Regional Director - Eastern Region

Carey Peters

Regional Director - Western Region

Jimmy Severino: Ithaca's Superstar

Above: Jimmy Severino proudly displays the many Special Olympics medals he has won over the years.

When you meet Jimmy Severino, it’s no surprise that he is known by many as “The Mayor of Ithaca”— his personality is magnetic and he has made many friends throughout the city over the years he has lived there.

Jimmy is involved with his community in many respects. For the past 30 years, he has been employed as a custodian at Challenge Industries, a non-profit that helps create pathways to employment for people with disabilities or barriers. He loves working and saves a good part of his money to go on vacation or attend baseball training camps every year.

One of Jimmy’s greatest loves is sports. He is an avid bowler and has a large display of trophies on his shelves, including a special plaque and ring he received when inducted into the bowling hall of fame. His bowling league took a hiatus during the pandemic but is finally starting up again this month, and Jimmy is thrilled to get back in the game. He is also a huge Yankees and Mets fan, and every year he goes to a Buffalo Bills game, although he likes the New England Patriots more.

Jimmy has a huge collection of his bowling trophies on display in his dining room.

Dozens of Special Olympics medals proudly hang along his dining room wall. He plays volleyball, baseball, runs track and loves snowshoeing and golf. He has a large collection of sports caps, jackets, and memorabilia, including a framed photo of Mickey Mantle.

Above: Jimmy Severino stands with Jessica Schifilliti, Jimmy's STC care manager. Jessica is also STC's Willowbrook Liaison, a specialized position that requires additional certifications and training than a normal care manager. Although Jimmy is very self-reliant and independent, Jessica helps him stay on track with his life goals and manage his finances. She checks in on him regularly and with FaceTime and in-person visits to make sure he's staying healthy both mentally and physically. Above all, Jessica works to encourage Jimmy's independence and helps him grow.

Jimmy has had an incredible life journey so far.

A 1950s postcard of The Willowbrook School

Despite being non-verbal, Jimmy is very communicative and discerning. He was born in New York City in the mid-1950s, and as a young child, around seven years of age, he was admitted into The Willowbrook State School, a state-supported institution for children with intellectual disabilities located on Staten Island. For those of you who may not know about the environment at Willowbrook, it was a very sad situation for young people with intellectual conditions back then.

Willowbrook was notorious for abuse and neglect, serving as a warehouse of sorts for children (and eventually, adults) with developmental disabilities. By 1965, the school housed over 6,000 residents, 2,000 people over its maximum capacity. As a result, residents were left unattended; naked, or in rags. Some children were strapped to beds or chairs or left alone within filthy wards without care or interaction. On top of the overcrowding, the short staff number made it impossible to provide adequate care for the children, who had often been abandoned there by their families.

Finally, in the 1970s, widespread advocacy for the people at Willowbrook began to take hold. Geraldo Rivera, an investigative reporter for WABC-TV in New York, conducted a series of investigations on the institution, exposing the abuse and unsanitary conditions there. As a result, over 5,000 parents of Willowbrook students sued the State of New York, and a consent decree was signed to commit NYS to improve community placement for the now-designated “Willowbrook Class.”

Despite this, Willowbrook remained open until the mid-1980s, and it was at this time that Jimmy finally left the facility and moved upstate, into a group Individual Residential Alternative (IRA) home in Ithaca.

This is where Jimmy’s life began to get really good.

The support staff at the IRA helped Jimmy express his needs and wants and work on achieving his goals toward independence, like doing activities he enjoys, finding his job at Challenge, and eventually moving into his own apartment. Jimmy has lived in his own place for over 20 years and still keeps in touch with some direct support professionals who first helped him with his progress. One in particular, Valerie, is a best friend of his. Even though she doesn’t work at Challenge anymore, they keep in touch on a regular basis and Jimmy spends holidays like Christmas, Thanksgiving, and the Super Bowl at her house. They’re even planning a trip to Florida together in the near future.

Click here to read the full story on our website.

Insurance for dependents after 26:

You don't have to feel cornered.

The American Care Act (ACA) was enacted in March 2010 to ensure that all Americans obtain health coverage and seeks to improve the overall quality of the care provided. Quality of care provided includes Medicaid expansion, coverage for pre-existing conditions, continuous coverage for individuals until age 26, and the development of the health insurance marketplace. Not only did it do these things, but it also carved out the ability for parents to keep their adult child with a disability on their health insurance past the age of 26.

This can be more than a little confusing! One thing to remember is you will need to contact your private insurance carrier (i.e. BC/BS) directly to understand the “rules.” In addition, if your employer group is self-insured (typically larger employer groups), they may have their own guidelines.

Want to see if this is an option for you?

START EARLY! After you’ve received notice that because your child has turned 26, they will be terminated from your policy. So don't wait until the last minute.

Instead, notify your employer and insurer as early as possible (ideally several years before your child's 26th birthday) that your child has a disability and will need to remain on your policy after they turn 26. Paperwork to keep your child on your insurance may not be able to be submitted until right before their 26th birthday but knowing the “rules” in advance is always the best way to prepare.

To prepare, you (or subscriber of the plan) need to contact the insurance carrier directly to understand what needs to be done and to see if your plan allows for continued coverage of disabled adults past the age of 26. If so, the insurer is likely to require documentation, including “proof” of the disability from a medical professional. Note that some insurers may only approve the coverage for a limited period and require a new application or review of the disability to continue coverage.

What should I be doing now?

If your adult child with a disability is under 26 and covered on your policy, contact your insurer or employer to learn what specific steps you need to take to keep them on your policy at 26.
If your adult child with a disability is under 26 and not covered on your policy, consider adding them back to your policy now.
If your adult child with a disability is over 26, it is still worthwhile to ask your employer and/or insurer whether they might still allow you to include this child under your policy.
And as always...reach out to your care manager if you have questions!

Health and Safety News

The Fatal Five are the top five conditions linked to preventable health deterioration or death of people with intellectual and developmental disabilities. As a caregiver, it is important to be aware of the fatal five, increase your knowledge of symptoms, and learn when to act. Read the full article on our website to learn more about each of these conditions and some tips for increasing your awareness.

What are the Fatal Five?

Aspiration

Aspiration is the act of breathing in a foreign object (or sucking food into the airway) and is the most common cause of death in congregate care settings.

Bowel Obstruction

Bowel obstruction occurs when something blocks the bowels and consequently, one’s digestive system is unable to function and an individual is unable to have a bowel movement or pass gas and is the most common cause of preventable death in community settings.

Dehydration

Dehydration occurs when you use or lose more fluid than you take in and your body doesn’t have enough water and other fluids to carry out its normal functions. This can present itself more in individuals who do not swallow well, drool often, refuse fluids, or have fluids restricted by others in an effort to combat incontinence.

Seizures

Seizures are an alteration in brain function which results in a change in awareness or function for a brief period of time. Seizures can present in multiple ways and can be the most severe of the Fatal Five.

Sepsis

Sepsis, or blood poisoning due to failure of the immune system to respond to infection, is often referred to as the “silent killer.” Sepsis is very prevalent and has a high in-hospital mortality rate. Since many signs of sepsis can mimic other diagnoses it is important if sepsis is a possible option to see a doctor right away.

Remember, the most important part of fixing a problem is identifying what the problem is. You can play a role by recognizing early warning signs, never discounting reports made by family members or DSPs—often they know the person better than anyone!—and being an advocate for the ones we love. When in doubt, get it checked out!

Click here for the full Fatal Five descriptions on our website...

Learn to Manage Chronic Conditions

with the Living Well Program

Living with a chronic condition like diabetes, chronic pain, depression, anxiety, COPD/asthma, heart disease, or cancer?

Learn to manage your condition with Bassett Healthcare Network's Living Well program. The new six-week workshop series start each month, and it's absolutely free to join.

Participate in Living Well with Diabetes, Living Well with Chronic Pain, or Living Well with Chronic Conditions, either online or through a mailed toolkit.

Click the button below for the Spring 2022 schedule:

Living Well Spring 2022 Schedule

You can also call 607-547,3948, email: LivingWellSessions@bassett.org,

or visit www.LivingWellSignUp.com for more information.

Know Your Rights: Healthcare Providers

Few relationships are held more sacred than the one between patient and doctor, and you have the right to choose the provider that is best for you. This is not just for your primary doctor, but patients’ rights also give you the right to choose when it comes to physician referrals.

Choosing a provider is one of the most important decisions you’ll make about your health care, and Southern Tier Connect is here to help you with that process if you want it. But also, it sometimes helps to do a little bit of your own research. Here are four simple steps you can take to help find a doctor that’s right for you.

Get a list of in-network providers: Talk to your care manager or call your insurance company for a list of doctors in your network. You’ll usually pay less to see a doctor in your network than a doctor who’s out-of-network.

Do your research: Ask friends and family if they recommend their doctors. You may even be able to read online reviews for doctors in your area.

Call the office for more information: Call the doctor’s office and ask them any questions you have to help you decide. Make sure they accept new patients and your health coverage.

Make an appointment, and give them a try: When you call to make your appointment, have your insurance card on hand. It might take more than one visit to figure out if a doctor is the right one for you.

If you have to go to the hospital, OPWDD recommends completing the “ready-to-go” form, which provides essential medical information in an emergency.

You can download the form here.

TechKnowlegeMe:

Learning How Technology Can Help You Find Your Voice

Do you know a person with I/DD who wants to connect

virtually but is not sure how to?

Since the COVID-19 pandemic began, the Self-Advocacy Association of New York State has been hosting weekly Zoom meetings for people with I/DD to connect with other self-advocates and learn all about advocacy.

Additionally, they provide videos about how to videoconference, online etiquette, managing links, and more!

See more on the SANYS Website