Advocacy Resources


Guidance for Visitation

We are monitoring this on a week by week basis as our communities struggle with the spread of the virus. These restrictions are being put in place to protect the people we support in our residential sites. We recognize that this is challenging, but please know that we are doing everything we can to ensure the safety and wellbeing of the people we support and staff members.

Guidance for Visitation

Home visits for residents have resumed. Family members need to coordinate with the sites in advance to make arrangements. Family members will need to agree and sign the Home Visitation Policy and keep track of activities and contacts during their visit on the Home Visit Questionnaire. If at any time the residential site goes on interim restriction, home visits will be paused.

Procedures and Policy Regarding Visits in Group Homes

The Arc Jefferson- St. Lawrence is pleased to once again be able to allow visitation with family members to our residential locations as of 3/16/21. We understand the concerns of families in regards to visitation with their family member being restricted due to State guidelines; but limiting exposure to varied people has been successful in preventing the spread of COVID-19 in all of our residential sites. Thank you for understanding.

To ensure the safety and well-being of all, visits must be scheduled in advance to ensure we have adequate protections in place and continue to limit virus exposure to the residents. 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. Thank You.

The following must be followed when looking to visit a family member who resides in one of our group homes:

  1. Hours of visitation will be between the hours of 10:00 AM and 6:00 PM and the visit must be scheduled with the Residence Manager or designated staff at the residential location.  These hours will be in place until we have a better understanding of what day services will look like in the future. Hours will be adjusted accordingly when the status of day services is updated.
  2. If having difficulty reaching the residence, please call the Administrator on Duty at 315-778-4878 for assistance.
  3. Only one family may visit at any time and no more than two visitors from that family group, with all being above the age of 16. Visits by different family members will be spread out to ensure we have the opportunity to sanitize and disinfectant the area prior to the next visit and to abide by social distancing.
  4. To ensure we have adequate time for family members, we must limit visits to one hour unless there are extenuating circumstances, such as visitation from outside the county. The length of time for the visit may be altered based on number of requests or other unforeseen issues.
  5. Depending on staffing or other issues at the location, such as behavioral or medical issues, the visits may have to be cancelled or rescheduled. We will make a concerted effort to enable visits to continue, but the needs of those who reside at the location will take precedence.
  6. All residents will be notified of a visitor prior to coming to the site. Training and support will be provided to limit exposure to the visitors and to maintain social distancing.
  7. Visitors are required to enter the main entrance of the home.
  8. All visitors must undergo symptom and temperature checks by facility staff at the main entrance prior to the start of the visit. Anyone reporting COVID-19 exposure, symptoms during the prior 14 days, or having a temperature over 100 degrees Fahrenheit shall be denied visitation.
  9. Visitors will be required to properly wear a face mask during the visit when social distancing cannot be maintained.  Refusal to wear a mask when social distancing cannot be maintained will result in the visitor not being allowed visitation.  Visitors must bring their own mask.
  10. Visitors will be asked to use hand sanitizer on arrival and promote hand washing or sanitizer use during the visit.
  11. We encourage visits to take place outside when possible with masks worn when social distancing cannot be maintained.  Visitations inside the residence will occur in a designated area in the house such as the bedroom, kitchen, dining or other area to limit exposure to other residents, promote social distancing and assist us in sanitizing the area after visits.  We ask that you stay in those designated areas during the visit.
  12. Regulations state that visitation may only occur on at the residence and shall not include sitting in a non-agency vehicle or leaving the site.
  13. Visitation will not occur with any site or individual that has someone in quarantine due to exposure to COVID-19 or isolation as a result of COVID-19.  We will notify the family member of such when they call for a visit.
  14. If a new case of COVID-19 occurs at the site, the site will not be permitted visits for 14 days or if the agency determines the need to conduct outbreak testing.
  15. Failure to abide by this guidance could result in restricting future visits.


The Arc Jefferson – St. Lawrence Pandemic Update

The number of virus cases across the State have stabilized, so data is not being reported at this time. We will update this page with information if there is a need in the future.

Vaccination Data for The Arc Jefferson - St. Lawrence: 05/19/21

Jefferson County:

  • Staff: 208 staff have been fully vaccinated and 24 staff have received their first shot of a two dose series.
  • People Supported: 185 fully vaccinated: includes all Residential/Day Hab., Pre-School, Vocational and Contract Staff.

St. Lawrence County:

  • Staff: 241 staff have been fully vaccinated and 10 staff have received their first shot of a two dose series. 
  • People Supported in Residences: 102 have been fully vaccinated.


Arc New York Vaccination Data


The Arc New York COCID-19 Impact Trend


Weekly Count Confirmed Case


Week to Week Fatalities



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


OPWDD Data: July 12, 2021

OPWDD has published a significant amount of data. The information includes Medicaid spend per year (2014-2020), demographic information about people served, Medicaid services and payments broken down by county, primary diagnoses, and spending by service (# of people/total cost). A link to the data is here:


NYDA Releases I/DD Workforce Emergency Report

New York Disability Advocates (NYDA) released a report that highlights the current workforce crisis in the state’s intellectual and developmental disabilities (I/DD) sector. The 2021 NYDA survey results capture data from January 1 through April 30, 2021 and includes data from 118 providers agencies which represent approximately 60% of statewide voluntary program funding for the field. The survey showed that statewide, provider agencies have an average 24.75% vacancy rate for direct care staff.

The NYDA report contains recommendations for implementation by policymakers to increase staff salaries and wages, systemic fixes such as a credential and career ladders and enhancements including tuition reimbursement, subsidies and other innovative solutions.


Call to Action: Special Education Funding

On April 12, the State Education Department (SED) sent their proposed recommendations to the Division of Budget (DOB) for the 2021-22 school year tuition rates for preschool and school age special education providers, which includes a 7% increase among other proposals. New York school districts received a 7% funding increase, however DOB responded to SED's request for special education funding by offering only a 4% increase and denying other important requests. 

DOB has continued an unfortunate, decades-long trend of systemic underfunding for special education schools. Given the historic discrimination against people with intellectual and developmental disabilities, this lack of fairness is particularly egregious. To their credit, SED countered DOB's latest letter by stating, “Providing the same 7% trend factor for special education providers as was provided to school districts would ensure funding equity and parity for all students with disabilities, without regard to their public educational placement.“ We commend SED for standing up for special education funding and not backing down.

With the amount of federal education dollars coming to New York, we need Governor Cuomo and state legislators to tell DOB to support SED’s plan. We have waited long enough to be recognized as a critical education resource and cannot let this opportunity pass us by! Add your voice to the call through our online campaign here


Continued Advocacy on Workforce Crisis

The Arc of the United States and The Arc of New York are strongly advocating to ensure Congress makes a historic investment in Medicaid HCBS and addresses the direct care workforce crisis in the American Jobs Plan. COVID-19 economic recovery must include investments in our care infrastructure.  

In support of these efforts, The Arc US announced the launch of their #MedicaidCantWait campaign toolkit. The toolkit includes sample social media graphics, letters to the editor, and more to support our ongoing advocacy.  

The Arc US also updated their #MedicaidCantWait webpage, which includes key shareable resources, a video explaining the need for increased Medicaid HCBS funding, and a call to action to add your voice to an online campaign to encourage your network to tell Congress why HCBS matters to them! 


NADSP 12-Month Survey on Delivering Supports During the Pandemic

The National Alliance for Direct Support Professionals (NADSP) and the University of Minnesota announced they are conducting a 12-month follow-up on providing support during the COVID-19 pandemic. This survey is intended to capture information on the DSP experience. Their initial report was released in July 2020, followed by a six-month follow-up report.

This survey differs from the previous ones, most notably in that it touches on vaccination status and vaccine hesitancy. We encourage all Chapters to circulate the survey widely and promote DSP participation.

The survey can be completed here.


CQL Study on COVID-19 Impact on Quality of Life

The Council on Quality and Leadership (CQL) conducted a study on the impact of COVID-19 on the quality of life for people with intellectual and developmental disabilities (I/DD). The study relies on data from over 2,000 Personal Outcome Measure (POM) interviews between 2018 and 2020. The study also references the reports published by Syracuse University that relied on The Arc New York COVID-19 data.

The CQL report draws attention to the funding cuts, closure of programs, and the escalating staffing crisis as influencing factors on decreased quality of life. This study offers bit of a different perspective than previous studies, as those have focused almost exclusively on health measures.


COVID-19 Data Project

The Arc New York is collaborating with New York Disability Advocates (NYDA) and Syracuse University on an ongoing project to collect and analyze weekly COVID-19 data from voluntary I/DD providers, including all Chapters of The Arc New York. This data helps inform our understanding of the risks of COVID-19 for people with I/DD, strengthen our pandemic response, and support our advocacy efforts. The published studies, along with media and academic coverage citing the project, can be found below. A Data Project year in review update can be found here:


Study on COVID-19 Cases in Nursing Homes Post-Vaccine

The Center for Health Policy Evaluation in Long-Term Care published a report on COVID-19 case rates at nursing homes. The study included a comparison of nursing homes who received early doses of COVID-19 vaccine to those that had not. Notably, the nursing homes that had the earlier vaccine availability experienced a 48% decline in cases, compared to a 21% decline among those nursing homes without the vaccine.

This is the first study of its kind and the results show a promising outcome as a result of vaccination. The New York Times published a story on the study, which can be read here.


Study on Disability Health Disparity

The Harvard Gazette: Study on how physicians view the quality of life of individuals with disabilities which may certainly lead to some health care disparities:


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:

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:


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.



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:


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.


Vax Versus Fiction Webinar

St. Lawrence Health System - Clinical Research:


Town Hall

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

Town Hall June 17, 2021

Town Hall April 7, 2021