A note from Joanna, State Director of The Arc Rhode Island
Happy Spring! As we see the upward trend of Rhode Islanders who have been vaccinated and begin to venture out we wanted to celebrate with you! Although many of us are still at home we are seeing - HOPEFULLY - the end of the COVID tunnel. Please still take caution and protect yourself and your loved ones by wearing masks and continue social distancing. Many of the organizations that serve our community are working hard to resume community-based services and ensure that individuals and families with disabilities are receiving what is needed to live a full and inclusive life that includes social activities and interactions with loved ones. 
Many of you have told us that you know children and adults who are experiencing anxiety about resuming school, work, or socializing with friends. I can well understand this fear -- It is kind of like going into the hospital and, on the day of discharge, you begin to question how you will take care of yourself? You want to go home, yet, you experience that fear and question: I am going to be ok? It is important to know that you are not alone. No matter who you are, everyone is having similar feelings, and that the old acronym FOMO (Fear of Missing Out) is being replaced with FONO (Fear of Normal) as we continue to reopen Rhode Island.
March was a busy month. Our Legislative Advocacy was focused on exploring the way parents experience special education. Many education bills this session were introduced and parents testified in support of improving education, provide more family engagement, and sharing their stories with Legislators to gain a real understanding of issues families face from everything starting with eligibility issues to the development and implementation of IEP’s or 504 Plans in order to meet a child’s unique and diverse needs. On Wednesday the 24th, parents testified in front of the Education Committee in support of H5833 to establish The Ombudsman Office of Special Education. You can watch the testimony HERE.
We welcome you to call us, text, email us to voice concerns, comments, and become part of our 100+ family member group to improve the processes that they must navigate when advocating for special education supports or services in school. We must keep the discussion going and welcome you to join us in our ongoing advocacy efforts to improve transition and adult services too!  
Also, as we close out this month, The Department of Behavioral Healthcare, Developmental Disabilities & Hospitals Newsletter printed an Excerpt naming March National Developmental Disabilities Awareness Month with a letter from our former US President Ronald Regan in 1987. I thought it important to share that too.
Enjoy the upcoming Holidays and sunny days with your family and friends! 
Joanna

 
All of our fundraising on April 1st will be dedicated to a scholarship fund that provides families with a 1:1 professional certified Educational Advocate to guide them and help them navigate the confusing and complex Special Education System.  

Please DONATE today and help families
who are raising children with unique needs  
Rhode Island's Day of Giving - 401Gives
Have you dreamed of making a real impact?
To change the life of a child with special needs?
Tomorrow, we all have a chance to be a part of
Rhode Island's Day of Giving
Tomorrow is the opportunity to unite our community around causes in which we truly believe and help nonprofit organizations
connect to the larger community.
We need your help!
Please donate to The Arc Rhode Island to support our many programs for children, adults, and family members.

BE PART OF MAKING A DIFFERENCE IN RHODE ISLAND!
For more information please visit 401Gives.org
or call or email Kayleigh at 401-363-9899 / coria@thearc.org
Meet Matthew :)
Matthew Boyer, our new Senior Director and Vice President of Corporate and Foundation
Partnerships at The Arc of The United States shares this story:
"I live on a farm called Charming Hill Farm where I raise goats and many other animals. Last week I had 15 baby goats born. In a crazy turn of events, I have been selling baby goat cuddles for $20 an hour to generate farm revenue. Who knew that was a thing??? The idea has exploded beyond my imagination. (I guess everyone is longing for a cuddle in this age of COVID.) So much so in fact that I had to hire a “cuddle master”. My “cuddle master” is my neighbor (also named Matthew) who is 26 and just happens to have Aspergers. Matthew was telling me yesterday that "he has a really hard time talking to strangers but has found that he loves talking to people that come to visit the farm & he isn’t shy about talking to them at all! I told him it is easy to talk to people when you are sharing something you love and care so much about like the babies. Seeing the smile this brings to Matthew's face with two goats that he personally delivered while I was out to lunch with a friend brings me joy! He has no experience birthing goats so he had to learn on the fly! 
He is beaming with pride at what he was able to do! 
Above the photo is a YouTube link to a video I took of some of the babies this morning.
 
watch a video of the baby goats HERE.
CIRCLES OF CONNECTIONS
“Relationships are about the 3 A’s:
Acknowledge, Accept, and Act."
-Stephanie from
Building Healthy Relationships Circle

The Arc Rhode Island CIRCLES OF CONNECTIONS:
We currently serve 40+ individuals and family members in six weekly circles, and new applications are being accepted. Anyone can join to make new friends, share your interests and life experiences. It is a great place to connect with others as we all navigate our new world.
Just click here and submit your application for FREE Membership

Our current Circles groups are: 

  • Chat Saturdays- A social group talking about what’s on their minds.
  • Building Healthy Relationships- Learning how to navigate the world of dating and making friends.
  • The Other Side of Grief- Talking about loss and how to take good care of ourselves.
  • Land That Job! It is not your typical job training group but for the motivated job seeker to learn what they want from a career, what "career" means to them, Joins at our weekly Land That Job circle!
  • Rainbow Group- Sharing life experiences as people with disabilities who identify as LGBTQ+.
  • Special Education Advocacy- Families sharing stories and learning how to navigate the education system and better advocate for their child attending K-12 school systems
  • Adult Family Circle - for siblings, moms, dads, guardians to share their approaches, concerns, and family tips while supporting their adult child. 

Please don’t put it off!
Join one of the CIRCLES OF CONNECTIONS groups today!
Kevin Savage, Director of BHDDH Developmental Disability Services asked CIRCLES OF CONNECTIONS to present our program at the BHDDH Community Forum on 3/22. Ken Renaud asked the 80 plus people on the ZOOM call to type what they like to do in their free time. The word diagram above was created by Advocates in Action using participant's responses. CIRCLES OF CONNECTIONS will be providing opportunities for “like-minded” people to gather and share their common interests in the near future. Thank you to all who answered, and we look forward to getting back out into the world when it is safe to do so.
Hearts in Action: Being A Foster Parent to A Child with Special Needs
Often when people hear the term “foster care,” their minds conjure images of cash-strapped families looking to earn extra income, or some kind of Dickensonian dystopia instead of what it truly is: A continuously rewarding and life-changing experience for both foster parents and the higher needs children they choose
to bring into their homes.
It takes a special kind of family to be willing to foster children who require more time and attention than the average child, but as many foster caregivers will attest to, it can also be one of the most rewarding. It is not uncommon for foster parents to have ongoing relationships with the children they foster after they are reunited with their birth families. Many even adopt the children they initially foster.
Continue reading below if you are wondering what is required to become a foster parent, what services are available to help in the journey, and what sort of people choose to open their hearts and homes to children that so desperately need them. 
Upcoming Events at The Groden Network
SELF-DIRECTED SUPPORTS NETWORK
A NETWORK OF INDIVIDUALS AND FAMILY MEMBERS USING
SELF-DIRECTED SUPPORTS IN RHODE ISLAND 

Online Meeting
Tuesday, April 20, 2021
7:00 - 8:30 PM

Guest presenter:
Perspectives Corporation Team
Learn about Perspectives' resources offerings
for self-directed users


Michael Coyne (pictured above) Graduated from this program & is now the proud owner of Red White & Brew, a specialty coffeehouse in North Smithfield, RI.
Recent Article on Adult Services by Gina Macris, Olmstead Updates Newsletter
Congregate Care Visitation Guidance
from BHDDH:
The Department of Behavioral Healthcare Developmental Disability & Hospitals has just released new guidelines for the visitation of individuals with disabilities
living in congregate group settings.
This is an important step towards reducing COVID fatigue for many individuals who have not seen their family members in over a year since the pandemic hit.
However, separation and isolation have taken a toll, and there is no substitute for physical contact, such as the warm embrace between a resident and their loved ones. Our collective family connections are paramount for our well-being and sense of belonging. We as humans need physical touch and caring to be the best version we can be. This welcome update will give hope to so many of us who missed and longed for seeing, being with, and sharing life events with our loved ones. The following information contained in this COVID-19 Guidance supersedes previously issued guidance regarding visitation in congregate care sites in Rhode Island. The CDC continues to recommend sites, residents, and families adhere to the core principles of COVID19 infection, including physical distancing (maintaining at least 6 feet between people). This continues to be the safest way to prevent the spread of COVID-19, particularly if either party has not been fully vaccinated.
 Click the link below for more information and guidelines.
Individuals with Disabilities & Family Members...
DID YOU KNOW?

**BREAKING NEWS**
After all of the advocacy in the last several years, it seems we are really gaining some traction. Tonight in President Biden’s speech announcing the American Jobs Plan, there will include a MAJOR announcement of an investment of $400 Billion to expand access to HCBS and support the direct care workforce.


Of specific note isn’t only the size of the investment, it is also the inclusion of both services and workforce supports AND the inclusion of permanent reauthorization of the Money Follows the Person program... There are not a lot of specifics, and we will be working with Congress to figure out how we can operationalize this in legislation, and look forward to pushing hard with our network to see this much-needed infusion. This package is expected to take until late summer/early fall to come together. If you have any questions, let me know. For the specific language on HCBS, MFP, etc, see below:
 
President Biden’s plan will:
  • Expand access to long-term care services under Medicaid. President Biden believes more people should have the opportunity to receive care at home, in a supportive community, or from a loved one. President Biden’s plan will expand access to home and community-based services (HCBS) and extend the longstanding Money Follows the Person program that supports innovations in the delivery of long-term care.
  • · Put in place an infrastructure to create good middle-class jobs with a free and fair choice to join a union. The HCBS expansion under Medicaid can support well-paying caregiving jobs that include benefits and the ability to collectively bargain, building state infrastructure to improve the quality of services and to support workers. This will improve wages and quality of life for essential home health workers and yield significant economic benefits for low-income communities and communities of color.

Rhode Island Department of Health COVID-19 Resources
Hotline (401) 222-8022 or 211 after hours;
Email RIDOH.COVID19Questions@health.ri.gov
Parents and Guardians of Children in School...
DID YOU KNOW?

An IEP is a legally binding contract.

Many parents believe that they must sign the IEP at the conclusion of their IEP meeting. As a parent, you have the right to take home the IEP to digest, understand and make any additional comments or suggestions and, in fact, an IEP is not "signed" in RI. It goes into effect 10 days after the team agrees and develops the services or supports and how progress monitoring will be reported.
You are part of the IEP Team and perhaps the most important member of the team.

If you need assistance with understanding the special education process call our Educational Advocacy Program at 401-363-9899 or shoot us an email at scocchi@thearc.org
High stakes, in-person testing in a pandemic?
If you feel that you would like to Opt-Out of RICAS statewide testing you have the right to do so:

Check out these great articles:
This article is part of LPI's Learning in the Time of COVID-19 blog series, which explores evidence-based and equity-focused strategies and investments to address the current crisis and build long-term systems capacity.
Research increasingly reveals a strong relationship — and reciprocal risk factors — between ADHD and PTSD. What explains this mutual comorbidity? PTSD is associated with dysfunction in areas of the brain implicated in fear extinction learning. New studies reveal that individuals with ADHD have similarly deficient fear circuitry, which could begin to explain the disorders’ link.
Let's Talk About
 Summer Services
What are ESY Services?

Extended school year (ESY) services are special education and related services provided to students with disabilities beyond the regular 180-day school year. Under the Individual with Disabilities Education Act (IDEA), school districts must provide ESY services if the student requires services in order to receive a free appropriate public education. The most common reason why a student receives ESY services is that the student will regress or lose progress in critical life skills during time off from school. 
Individualized ESY services are provided at no charge to parents. How the services are delivered is a team decision, and can range from 1:1 instruction at home, to participation in a summer program run by the school district, to continuing participation in related services like occupational or speech therapy.
ESY services are not summer school, credit recovery, or enrichment programs.
Who is eligible for ESY?

The IEP team (which includes the parent) decides whether a student requires ESY services by meeting to review the student's progress toward IEP goals. Eligibility is determined when a student needs extra reinforcement of skills to prevent the loss of important learning/skills ("regression"), or when a student is at significantly higher risk for difficulty with regaining ("recouping") skills lost over time than other students.
If the loss of skills and extra time needed to regain them is likely to create a significant barrier to progress toward goals and to learning a student is considered suitable for ESY.
What are the standards for ESY eligibility?

Although there are no federal regulations on ESY eligibility, some standards have been set by case law. These include:

  • Regression/Recoupment
  • Degree of Progress Toward IEP Goals
  • Nature and/or Severity of Disability
  • Emerging Skills/Breakthrough Opportunities
  • Issues for Students Needing Behavior Support
  • Least Restrictive Environment
  • The decision must be based on the data collected by the IEP team and should include predictive (what is likely to happen in the future) data as well as retrospective data (what has happened in the past)
  • A student who has received ESY in the previous year is not automatically entitled to those services the following year.
If you think your child might need ESY, you should discuss eligibility criteria with your child's IEP team at your next meeting.
The sooner ESY is discussed, the better, as data needs to be collected, and resolving disagreements takes time.
An Educational Advocacy Success:
Just one of this month's success stories was meeting with a school to have a child's 504 changed to a much-needed Individualized Education Program, an: (IEP). The parent had asked the school yet several months had gone by. We assisted the parents to request - in writing - to develop an IEP because their child had significant learning loss during COVID. The district responded quickly to the request and we are working with the family and school team members to ensure the child's educational needs are met. 
 
MINDFULNESS CORNER
Now more than ever, it is very important to find & protect your peace of mind. We will be sharing monthly tips & strategies to help you improve mindfulness & wellbeing.
Check out some other helpful articles: