The Alliance Center for Independence and its allies have compiled a list of some of the most pressing issues facing people with disabilities in NJ (based on our contact with our constituents) and have presented them to state emergency, legislators and human services officials. We recently submitted the list to Governor Murphy. (See below)
We are urging people with disabilities and their family members to write to Governor Phil Murphy to let him know of the issues you are facing during this crisis. During most crises, the issues facing people with disabilities are often crowded out by others...but we can change that!
Paul Aronsohn, the New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, offered to collect our letters and will share them with the Governor.
You may send your email to Paul.Aronsohn@treas.nj.gov or Associate Director, Christine Bakter at Christine.Bakter@treas.nj.gov (Please copy your email to adacil@adacil.org)
You may also send a letter directly to Governor Phil Murphy, 225 West State Street, Trenton, NJ 08625 or visit his website at nj.gov/governor/contact
You can read the letter that ACI sent to legislators at the link below.
CORONAVIRUS CONCERNS REGARDING PEOPLE WITH DISABILITIES
(UPDATED: 5/4/2020)
ACI has been working on emergency preparedness issues/advocacy for people with disabilities since Hurricane Irene. Although we have been successful in training hundreds of people with disabilities and emergency managers, we are still encountering similar issues we saw with Sandy.
Since early March, ACI staff have worked diligently at contacting our consumers in Middlesex Somerset and Union counties to ensure they have the resources and food that they need.
As of April 28th, ACI has made 3500 wellness calls to our consumers, offered lunch for children with disabilities, had dinner sent to 34 families and assisted 67 people with disabilities/families with food from our food pantry, including delivering food to 22 homebound individuals. We have also provided 26 families with PPEs. ACI has made 1449 wellness checks on those on the Middlesex County Register Ready list.
In talking with and assisting our consumers with resources, we have learned of the below concerns facing our community. These concerns do not reflect all of the issues that people with disabilities and their families are facing during COVID-19. ACI is keeping a running list as issues that are brought to our attention.
PERSONAL CARE ATTENDANTS
There is concern among people who rely on personal care services and how they will be impacted if their attendant calls out sick or does not show. Do agencies have a backup plan in the event of a shortage?
How do people with disabilities know that their attendant is not carrying the virus? We are aware of several families refusing to let their attendant come into their home out of fear. Is there an effort to test personal care attendants to assure people they are working with are not getting the virus? How can we safeguard the individual from contracting the virus while still getting the assistance they need?
What is the state doing to ensure people who work as PCAs, HHA and CNAs are provided with the exhausted supply of protective masks, gloves and other personal protective gear. People in these occupations should be given priority, along with doctors, nurses and other medical professionals in the distribution of this gear.
Latex free masks and gloves must be available and used around people with spina bifida and catheterize. These individuals are highly allergic to latex and could result in a life-threatening situation if they are exposed. People who are allergic to latex need to be cautious with face masks. The Uline mask S-9632 is not made with latex.
We have heard of agencies running group homes and not assigning the Direct Support Professionals (DSPs) to specific homes. DSPs are not equipped with PPEs or told not to wear them in the home. The only protection is that their temperature is taken upon entering. DSPs should be assigned to specific homes to help contain the spread of the virus. DSPs should be provided with the proper protection for their safety and the safety of those residents living in the homes.
We would like to see DSP’s/PCA’s go through the training to be considered an essential employee and be issued the essential employee card.
DO NOT RESUSCITATE (DNR)
No hospital should be encouraging a patient's guardians or family members to sign Do Not Resuscitate forms when elderly patients are admitted with the coronavirus. This situation has been brought to our attention and is an obvious concern to us a disability organization because many people with significant disabilities are just as vulnerable to this practice. Many people with significant intellectual disabilities are their own guardians, and we want to ensure that they realize what DNR means and that they have a right to refuse to sign the DNR.
It has been brought to our attention that hospitals are encouraging long term care facilities to not bring people to the hospital. Please see statement from one of our consumers: "Hi Carole, since we last spoke my sister who is an attorney has 2 cases from 2 different Nursing homes where the facility has been advised by area hospitals not to bring their patients to the hospitals and to manage medical emergencies at the facilities."
On March 26th and 27th, the Commissioner of Health stated during the daily briefing that a bioethics advisory committee was being formed in NJ to look into these issues and to provide some guidance to the medical community. ACI responded as this is a critical issue. We suggested that people with disabilities and family members were a part of this committee. We contacted the state and submitted names of individuals who we felt would be instrumental to the committee. On April 2nd, Commissioner Judith Persichilli, said there was no bioethics team and said it was "A professional advisory committee on how to deliver care." ACI feels regardless if this committee exists or not, the Governor needs to hear from disabled individuals and families members on this issue of utmost importance.
UPDATE CRITICAL CARE
On April 11, the Department of Health released a document, "Allocation of Critical Care Resources During a Public Health Emergency.” ACI, and other organizations have submitted their input on the document and how people with rights of disabilities need to be protected.
We are concerned that the committee that was formed to develop this policy did not have enough input from people with disabilities or their family members. We believe getting their input is crucial because the policy affects our most vulnerable population. We have voiced these concerns to Commissioner Persichilli and have requested a list of the names of the committee members.
We appreciate the bulletin that was released by the Office for Civil Rights at the US Department of Health and Human Services which states “Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” Roger Severino, the office’s director, said in a news release. “Persons with disabilities, with limited English skills and older persons should not be put at the end of the line for health care during emergencies.” However, there is still a concern that this will not be followed in these very difficult times.
FOOD INSECURITY ISSUES
Many people who rely on food delivery from their grocery store have to wait several weeks for their home delivery. Stores are experiencing so many requests for this service that there is a tremendous backlog. There needs to be a system in place to give priority to the elderly and people with disabilities who are unable to get to the store.
Several stores including Stop & Shop, Target and Dollar General have specific hours dedicated to people who are elderly. Can this be expanded to other stores and include people with disabilities? While we are grateful that more stores are offering special hours, it is marketed to seniors. We have contacted several of these stores and were told it was also for disabled, however, the marketing did not state that.
ACI suggests that grocery stores taking online orders for food delivery include a check off box for those that are disabled and/or homebound that they may have first priority in delivery.
RESOURCE HOTLINES
There is a long wait for the Department of Health Hotline (1-800-222-1222). Staff have called this number several times and the hold time is at least 20 minutes.
The people on the NJ 211 line are very nice and are compassionate. However, they seem to need additional training on providing accurate and complete information that addresses the need and situation. Staff have called the number several times and were given inappropriate numbers to (one to a research organization for doctors in Georgia when asked about where to obtain masks in Middlesex County, NJ). Even after additional lines were added, we are still receiving complaints from our consumers who are unable to get through.
A year-long hotline needs to be set up and run by people with disabilities in the 11 Centers for Independent Living (CIL) throughout the state. CILs are mandated to provide information and referral services, it would not take much to convert what we are already doing.
LONG TERM CARE FACILITIES/GROUP HOMES
Families/guardians that have a loved one in a long-term care facility are not getting updates on how their loved ones are doing. We have heard of several situations where residents had either died or were in the hospital testing positive, but family members were never informed that residents in the facility had the virus. (Example: It was brought to our attention that a resident living in an over 55 apartment complexes, had tested positive and was in the hospital. The landlords never informed the other tenants. Conversations with families reveal this is also happening in group homes and developmental centers.)
Families/guardians need to be kept aware of the situation at these facilities and given updates on how their loved ones are doing. Going a week without contact is not acceptable. This is also happening in nursing homes.
UPDATE - The state has begun swab testing of the 5 developmental centers. ACI would like a timeline as to when swab testing will begin in group homes and congregate care settings.
HOSPITALIZATION
A protocol needs to be in place at hospitals where guardians/parents can stay with their coronavirus-diagnosed son or daughter who may experience anxiety and/or behavioral issues. This can be done on a case by case basis. Many individuals, especially those with autism simply can not be left alone in a hospital. Provisions need to be made for families/guardians so they could stay with their child as well as having PPE to stay safe. This is not exclusive to people with I/DD, but applies to anyone who has difficulty communicating. There are hospitals in NJ that are allowing families/guardians in with disabled loved ones, we are suggesting a directive from the Governor that all hospitals abide by this. Rush University Medical Center in Chicago has put a similar policy in place.
When a person with developmental disabilities presents with a fever and other symptoms but is unable to confirm additional symptoms, how will it be determined to treat them? We are not aggressively treating people who are unable to report symptoms. Early treatment has been found to prevent hospitalization and the need for ventilators.
ACI's Executive Director has a autistic son who does not have verbal speech, has severe social anxiety, and behavioral problems. If hospitalized, he would not understand what was happening or advocate for himself and this anxiety would escalate his behaviors. It is imperative that a family member/guardian be allowed in the hospital to provide comfort and to be able to advocate on their behalf.
UPDATE: The NJ Department of Health (DOH) issued the hospital visitation policy for people with intellectual/developmental disabilities effective April 25, 2020. DOH now considers a designated support person essential to patient care people with disabilities. As a result, hospitals must allow a designated support person to be with the individual during hospitalization. ACI would like to see this policy broadened to include individuals with all disabilities including mobility and invisible disabilities.
People with disabilities have been fighting for decades to live independently in their communities and not in nursing homes. They now fear going to a hospital for fear they will not be given the proper care or they will end up being sent to a nursing home.
Dialysis - What plan is in place for people who have tested positive for the virus in transporting them to their dialysis treatment. There seems to be much confusion surrounding this issue. What procedure does the state have in place?
TECHNOLOGY
Many people with disabilities/families do not have access to tablets, laptops, smart phones, etc. Many do not have internet service and are unable to access imperative information. One of our consumers was unable to use the internet once libraries closed. ACI mailed hard copy information and would make weekly calls to check on the consumer.
Not having access to technology during a quarantine also adds to social isolation. People with disabilities without access to technology are unable to take advantage of many online programs or see their families and friends through programs such as Facetime, Skype or Zoom. ACI has observed an increase of consumers wanting to talk on the phone and requesting check-in calls the longer the pandemic goes on.
It is very important for people with disabilities and family members to write to Governor Murphy to let him and his administration know about the concerns facing people with disabilities during the coronavirus pandemic. Below are sample letters to use as a guide to composing your letter. Remember your situation is unique. If you need help writing a letter or have questions, please contact Luke Koppisch at lkoppisch@adacil.org
