Advocacy Resources

New Budget Advocacy Strategy and Toolkit

As you are well aware, Governor Hochul’s Executive Budget did not include our budget requests of an 8.5% cost-of-living adjustment (COLA) and $4000 Direct Support Wage Enhancement, which we have been championing since fall 2022. While we did receive a 2.5% COLA, it is not nearly enough to make up for over a decade of underinvestment investment, during which we received an overall COLA totaling only 6.6%, which pales in comparison to inflation of more than 27% over the same time period.

Our actions over the next few weeks and our interactions with legislators will be vital to our advocacy success. To support your meetings and messaging we have developed updated one-page handouts for legislators and additional talking points with our NYDA partners. We have also developed two template Op-eds for you to customize and submit to media outlets in your community. One is focused on the critical need for funding and our budget requests, and is suitable for submission by providers or family members. The other focuses on the disparity in Direct Support pay between state-operated and voluntary providers, and is more appropriate for providers.

One of the most important requests for these meetings is for legislators to send a letter to their leadership in their respected houses about our requests. When you meet or message your legislator, please provide them with this template. If they are amenable to sending the letter, follow up to receive the copy they have sent. Please do not simply have them forward the template as is, without their signature. We are tracking this and depending on you!

These materials can be found below, and in our Budget Advocacy Toolkit.

Budget Advocacy Toolkit Materials

Developmental Disabilities Planning Council (DDPC) Covid-19 Report

The DDPC has announced the release of their report on New York State’s response to COVID-19 for people with intellectual and developmental disabilities (I/DD).

The Arc New York State Office and Executive Directors Association met with DDPC representatives in June to share our experience during the COVID-19 public health emergency. Our office provided DDPC representatives with materials relating to the state’s response and access to our COVID-19 updates to assist with developing the report. DDPC engaged with over 2,000 self-advocates, parents and providers to hear stories about how the pandemic and state’s response impacted them. The report includes DDPC findings and recommendations to the Governor and Legislature. Some of the recommendations include the following:

Create an emergency management plan specific to the I/DD community
Include the I/DD community in the COVID-19 review RFP issued by the Governor's Office on July 20, 2022.
Make health and safety rules easy to understand and easy to access, especially for people with I/DD in underserved communities. Give the rules to providers and CCOs as soon as possible.
Think of the I/DD community's needs when making rules about visitation, hospital discharge, vaccinations, testing, mask wearing and quarantining.
Create a plan to keep sustain services for people in the I/DD community, including people in the community or with special needs like being medically fragile.
Work with local emergency management offices to make a plan to meet the needs of the I/DD community.
Train first responders to understand and respond to the special needs of the I/DD community during a public emergency.
Make data collection easier and improve access to data during an emergency.
Improve coordination between NYS agencies and local government offices during a public emergency.
Increase staffing to support people with I/DD.
Make other housing options in the community more available for people with I/DD.
Maintain waivers to continue flexibility for providers and offer more flexibility to people with I/DD who self-direct.
Help people with I/DD use the internet, get computers and access online programs and services.
Partner with organizations to improve communication with underserved communities.
Promote the mental wellness of people with I/DD, family caregivers and the I/DD workforce.

Tell Congress to Pass Disability Funding Now!

We need a historic investment in home and community-based services that would improve the quality of life for millions of people with disabilities, their families, and the direct support professional workforce.

TAKE ACTION NOW

Bipartisan Co-Sponsors Added to SSI Asset Increase Legislation

Current Supplemental Security Income (SSI) rules require that someone receiving SSI can only have $2,000 in countable assets. Married couples can only have $3,000. The SSI Savings Penalty Elimination Act [S.4102] raises the SSI asset limit to $10,000 for individuals and $20,000 for couples. The legislation also increases those numbers every year based on inflation. In June, Senators Wyden (D-OR), Cassidy (R-LA), Casey (D-PA), Scott (R-SC), Hassan (D-NH), and Collins (R-ME) joined the legislation.

Contact your legislators to support the SSI Savings Penalty Elimination Act Now!

Advocacy for Special Education

Governor Hochul vetoed legislation which would have provided special education schools (4410, 853 & Special Act schools) parity with the yearly public-school increase. She then promised a “COLA of 11% for the 2022-23 school year” which was reiterated in the Executive Budget proposal. However, due to the current tuition rate setting methodology, the final budget language and DOB “side letter” will not allow most schools to get and/or keep this 11% increase.

Urge the Governor and the Division of Budget to find a solution that keeps the promise to our schools and New York’s most vulnerable children for an 11%/$240 million increase effective July 1, 2022. Use this link to share your voice: www.cpstate.org/advocacy!

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:

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.
If having difficulty reaching the residence, please call the Administrator on Duty at 315-778-4878 for assistance.
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.
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.
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.
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.
Visitors are required to enter the main entrance of the home.
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.
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.
Visitors will be asked to use hand sanitizer on arrival and promote hand washing or sanitizer use during the visit.
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.
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.
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.
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.
Failure to abide by this guidance could result in restricting future visits.

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.

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.

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.

Vax Versus Fiction Webinar

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