Advocacy Resources

The Arc Jefferson – St. Lawrence Pandemic details will be updated regularly, but please bear with us as staffing may be limited during the holidays. If you need immediate assistance, please contact the supervisor who works directly with your family member. Thanks!

 

Paid Opportunity to Support Accessible COVID-19 Information

Interview Recruitment Notice

Help Improve COVID-19 Outreach for Adults with Intellectual Disabilities

Are you a family member or support person of an adult with an intellectual disability?

The CDC and RTI International are interested in speaking with adults with an intellectual disability and their family members or support people to develop educational materials about COVID-19 that meet the unique needs of adults with intellectual disabilities.

Fill out the short survey below to see if you and your family member are eligible to participate in a 30 to 45-minute interview on Zoom to get your feedback on COVID-19 educational materials.

Interviews will take place in March and April, and eligible participants will each receive a $50 gift card in appreciation of their time.

Take this 5-minute survey to see if you are eligible: www.COVID19educationalmaterials.thehennegroup.com

You may also call this toll-free number: 877-214-5548

Additional Information

RTI International, a non-profit research organization, is working with the Centers for Disease Control and Prevention (CDC) to develop educational materials about COVID-19 that meet the unique needs of adults with intellectual disabilities. Interviews will take place in March and April.

RTI is interested in speaking with adults with an intellectual disability and their family members or support people.

  • We will interview adults with an intellectual disability and their family member/support person together.
  • The interviews will take place on Zoom and will last about 30 to 45 minutes, depending on individuals’ preferences to complete the interview together or separately.
  • The interviews will focus on getting feedback on COVID-19 educational materials.
  • As a thank you, both participants will receive a $50 gift card after the interview.

Participation in these interviews is completely voluntary. These interviews will help inform the development of educational materials about COVID-19.

Take this 5-minute survey here to see if you are eligible: www.COVID19educationalmaterials.thehennegroup.com

 

Call to Action: Stop Budget Cuts!

We need your help to contact legislators and tell them you are against proposed New York state budget cuts and other actions affecting people with I/DD, families, and the providers who support them. It takes less than two minutes to send your message to legislators using this link: https://p2a.co/GaOtqpi

The Arc New York is advocating for:

  • Rejection of a $60M 1% targeted cut by OPWDD
  • Restoration of the deferred $89.7M cost-of-living adjustment (COLA)
  • Support for enhanced pandemic pay for Direct Support Professionals (DSPs)
  • Statutory guarantees that all proposed cuts will be eliminated should New York receive the requested $15B in federal aid

It is vital for legislators know where we stand and it is our duty to inform them. We must hold our legislators accountable for what happens within state government. Please take a few minutes to share your story and convey the impact of these cuts.

 

Guidance for Visitation

Due to the increased number of positive cases of COVID-19, we are still not allowing visitors to our locations at this time. We are strongly recommending no home visits, as well. If this occurs, we are asking for negative results from a COVID-19 test before a person returns. We are monitoring this on a week by week basis as our community struggles with the spread of the virus and will keep you informed if there are any changes.

These restrictions are being put in place to protect the people we support in our residential sites during this period of increased virus activity in both Jefferson and St. Lawrence County. We recognize that this is difficult, but please know that we are doing everything we can to ensure the safety and wellbeing of the people we support and staff members. Thanks for your understanding and you may call the Residential office at (315) 836-1217 in Jefferson County or (315) 379-0701 in St. Lawrence County with any specific questions.

 

The Arc Jefferson – St. Lawrence Pandemic Update

The agency will post regular updates on this page to keep people informed on local changes occurring as we work through the COVID-19 crisis. We appreciate your ongoing support!

The Arc Jefferson – St. Lawrence Pandemic details will be updated regularly, but please bear with us as staffing may be limited during the holidays. If you need immediate assistance, please contact the supervisor who works directly with your family member. Thanks!

2/26/2021

  • People Supported
    • Number of people supported under DOH or physician directed quarantine/isolation: 1
    • Number of people supported currently under agency implemented quarantine/isolation: 16
    • Number of people supported currently quarantined as a result of the NYS Travel Advisory: 0
    • The total number of people supported under any form of quarantine/isolation since the last survey. This includes people that were on and then taken off within the week: 40
    • Number of people supported with current confirmed COVID-19: 1
    • To date, the total number of people supported confirmed positive for COVID-19 after receiving one or both doses of the vaccine: 3
    • Number of people supported currently hospitalized for COVID-19: 0
    • Cumulative number of people supported deaths to date due to COVID-19: 1
    • Cumulative number of people supported recovered to date from COVID-19: 36
    • Please provide the total number of people supported who are currently eligible to receive the vaccine: 307
    • To date, the total number of people supported in residential programs who have received the 1st dose of COVID-19 vaccine: 270
    • To date, the total number of people supported in residential programs who have received the 2nd dose of COVID-19 vaccine: 186
    • To date, the total number of people supported declining vaccination either by actively opting out or not completing the consent form: 22
  • Employees
    • Number of employees currently under DOH or physician directed quarantine/isolation: 8
    • Number of employees currently under agency implemented quarantine/isolation: 0
    • Number of employees currently under self-imposed quarantine/isolation: 0
    • Number of employees currently quarantined as a result of the NYS Travel Advisory: 0
    • The total number of employees under any form of quarantine/isolation since the last survey. This includes employees that were on and then taken off within the week: 7
    • Number of employees with current confirmed COVID-19: 5
    • To date, the total number of employees confirmed positive for COVID-19 after receiving one or both doses of the vaccine: 8
    • Number of employees currently hospitalized for COVID-19: 0
    • Cumulative number of employees deaths to date due to COVID-19: 0
    • Cumulative number of employees recovered to date from COVID-19: 92
    • Please provide the total number of employees who are currently eligible to receive the vaccine: 761
    • To date, the total number of employees receiving the 1st dose of COVID-19 vaccine: 296
    • To date, the total number of employees receiving the 2nd dose of COVID-19 vaccine: 224
    • To date, the total number of employees declining vaccination either by actively opting out or not completing the consent form: 404
  • Aggregate
    • Cumulative Count of COVID-19 Cases for People Supported: 38
    • Cumulative Count of COVID-19 Cases for Employees: 97
    • Combined Cumulative Count of COVID-19: 135
  • Other Important Information:
    There has been an increasing number of exposures and several staff that have been deemed positive for COVID-19. We will continue to monitor and will provide updates regularly. The agency continues to follow the guidance of OPWDD in regards to quarantines for possible exposure at our sites. In addition, we have restricted travel between the counties unless prior approved and only essential staff are allowed in the residential sites. Community activities must be planned and we are asking for them to be reduced from sites where there are large numbers of people.

 

Q & A on the Pandemic Status at The Arc Jefferson – St. Lawrence

Q: Will the residences start to use the new,15 minute at-home tests?

A: At this time, we are working with physicians to determine if a person should be tested based on symptoms. If it is recommended, we take the resident to have the testing, so it is not being done at the residential sites. Anyone who has COVID-like symptoms is taken for a test. Additionally, if a person has been potentially exposed, staff will contact the primary care provider and follow their direction.

All residents are given a COVID-19 symptom check twice daily and the staff are checked at the beginning of each shift and after 12 hours, if they are still on site. The accuracy of the new 15 minute tests is not yet known and we look forward to seeing more data in the future.

Q: If a resident or person supported has signs of an illness how will the agency respond? What is your testing and quarantine protocol? How will the agency respond to a positive case?

A: The people we support have their temps checked two times daily, along with COVID-19 checks completed. The results are documented and monitored by nursing. Staff temperatures and COVID-19 checks are completed at the beginning of each shift and every 12 hours thereafter.

If a resident is showing signs or is ill, we will follow the recommendation of the nurse which will, in most cases, prompt for them to be seen by a physician. We will then follow the recommendations of the physician and/or the local Dept. of Health (DOH), if indicated.

At this time we do not have an active isolation unit in either county and would isolate in place at the residence. The resident would have their own room and would be limited in leaving that room until after the quarantine time with the exception of using the bathroom. Cleaning, sanitizing and the use of PPE by staff would be followed, as is standard at this time. We would follow all protocols of our governing entities: DOH, CMS and OPWDD.

If necessary, we presently do have a site in St. Lawrence County we could reopen as an isolation unit. Many other Arc Chapters have isolated in place with success. We still are limiting staff to working one location as much as possible to limit spread.

Q: Given the infection is far more prevalent in the North Country now than when day habs., residences and the workshop were locked down in the spring, is the agency contemplating another closure/lockdown, and if so when?

A: We are keeping a close eye on it. We are utilizing facilities with large areas for people to spread out and everyone is wearing PPE. We also follow strict protocols for cleaning and sanitizing. Visitors are discouraged and are screened if it is necessary for them to enter the building.

We are not allowing anyone who is not feeling well to report to work and staff are monitoring those who work in this environment closely. If the numbers continue to rise in the counties then we will look at ending production by those supported for a time.

We also have State guidance to follow if we are designed one of the counties with the yellow, orange and red designation.

Q: If parents want to remove their children, can they be tested immediately prior to being brought home?

A: People supported can be tested at the Urgent Care facilities. I do not believe they can go to the county testing sites unless recommended by public health or a physician. If they go home for any extended period of time, we would request they be tested before coming back and may be subject to quarantine in the site.

 

FACTS ABOUT COVID-19 VACCINES WEBINAR

Please take some time to watch The National Alliance for Direct Support Professionals’ 15-minute video addressing the efficacy and safety of the COVID-19 vaccine, as well as some common myths. The COVID-19 vaccines are now here and becoming widely available. As this is good news, we also know there is some confusion and worry among people about the efficacy and safety of the vaccine. In this webinar, NADSP in partnership with the American Academy of Developmental Medicine & Dentistry (AADMD) will address vaccine concerns: https://nadsp.org/webinar-covid-19-what-dsps-need-to-know/?mc_cid=170f1faf45&mc_eid=8f07b4a970.

 

Save Our Services Rally Update

The agency’s CQL Team of Sherri Love and Meaghan Voss participated in the Zoom Rally, “SOS”  Save our Services, hosted by NYCfair and they provided the following update. There were 1,000 people in attendance and at least that many more in the waiting room because of the capacity.  The Rally was excellent with many self-advocates, parents, and DSPs sharing their stories.  During the rally, parents and service providers shared their fear if budget cuts continue, institutions much like Willowbrook may be our future. 

New York State Assembly people and Senators shared personal experiences and stated that they full heartily support maintaining funding and increasing service provisions for OPWDD and not for profit agencies, such as The Arc Jefferson – St. Lawrence.

The SOS Rally was recorded and is available at www.nycfair.org. We encourage you to view the presentation and show your support for “no more budget cuts, cuts in services, and greater wages for DSPs.”  The phone number to Governor Cuomo’s office is 518-474-8390.  The Governor’s office should hear from all of us…Self-Advocates, DSPs, Managers, Consultants, Family members, Administration, and Clinicians.  

Below is the fact sheet from the SOS Rally to use for outreach to legislators.

 

Impact on COVID-19 for People with Intellectual and Developmental Disabilities in NYS

 

On Thursday, February 4, The Office for People With Developmental Disabilities (OPWDD) shared data regarding the number of confirmed cases of COVID-19, and deaths due to COVID-19 within the service system.

As of February 3, 2021:

  • 8,977 individuals supported have been confirmed to have COVID-19.
    • 6,561 of these cases involve individuals residing in certified residential facilities.
  • There have been 594 deaths relating to COVID-19.
  • 12,066 staff have been confirmed to have COVID-19.

OPWDD has not yet supplied more detailed data regarding COVID-19 cases by setting.

 

COVID-19’s Impact on the Employment of People Living with Disabilities

NYSID President and CEO Maureen O’Brien appeared on The Sanctuary for Independent Media podcast for a conversation on COVID-19’s Impact on the Employment of People with Disabilities.

O’Brien discusses the challenges with securing employment opportunities for people with disabilities stating that there was a 67% unemployment rate for people with disabilities prior to the pandemic and this rate has risen with the onset of COVID-19. Additionally, services and supports provided by non-profit organizations are fiscally challenged with a 20% withhold on state funding in addition to changes in Medicaid reimbursements for services. All of this impacts the delivery of services. O’Brien recommends a wholistic approach to understanding employment of individuals with developmental disabilities. When individuals are employed either full-time or part-time, they are fulfilling their goals and as a result will require less in the form of SNAP benefits, SSI and possibly other fiscal supports. O’Brien calls for a prioritization by the state for funding for supports and services to nonprofits. There are many legislative champions and she encourages people to reach out to elected officials and ask them to prioritize individuals with developmental disabilities.

The Sanctuary for Independent Media is a telecommunications production facility dedicated to community media arts. They host screenings, production and performance facilities, training in media production and a meeting space for artist, activists, and independent media makers of all kinds. Click here to hear O’Brien’s Podcast with them.

 

Guidance and Policy on Reopening on Day Services, Allowing Community Activities, Bringing Back Residents Currently with Family, and Family Visits

Revised COVID-19 Day Habilitation Guidance Revised Interim COVID-19 Guidance Regarding Community Habilitation Services Revised Interim COVID-19 Guidance Regarding Prevocational Services Interim COVID-19 Guidance Regarding Pathway to Employment Interim COVID-19 Guidance Regarding Respite Interim COVID-19 Guidance Regarding Supported Employment Daily Trip Log Home Visit Questionnaire Extended Home Visit Questionnaire Guidance and Policy Document for Home Visits For Family Members COVID-19 Safety Plan for Certified Day Program Reopening - Main St. Canton COVID-19 Safety Plan for Certified Day Program Reopening - Commerce Lane Canton COVID-19 Safety Plan for Certified Day Program Reopening - Norwood COVID-19 Safety Plan for Certified Day Program Reopening - Jefferson COVID-19 Safety Plan for Certified Day Program Reopening - Jefferson CPV COVID-19 Safety Plan for Certified Day Program Reopening - Watertown COVID-19 Safety Plan for Certified Day Program Reopening - St. Lawrence COVID-19 Safety Plan for Certified Day Program Reopening - Ogdensburg

These procedures are the result of reviewing guidance from OPWDD, ensuring staff is aware of the information and process and then developing the agency procedure related to such. We are currently working on our safety plan for reopening and procedures related to this guidance and will have that out soon. Please contact the residential site with any questions.

 

Vax Versus Fiction Webinar

St. Lawrence Health System - Clinical Research: https://www.stlawrencehealthsystem.org/services/clinical-research.

 

Town Hall

Howie Ganter held the virtual Town Halls for family members. Videos of the open forums are here:

Town Hall February 9, 2021

Town Hall December 3, 2020

Town Hall September 30, 2020

Town Hall August 12, 2020

Town Hall June 17, 2020

 

Journal of ID Report on Serving People During the Pandemic

Click here: https://onlinelibrary.wiley.com/doi/pdf/10.1111/jir.12740 to review The Journal of Intellectual Disability's abstract on serving people with intellectual and developmental disabilities during the first 100 days of the COVID-19 pandemic.