Fighting for the Vulnerable

STATEMENT BY Ms. Marcella Goheen11/11/2020 @ 11:00 AMFor Presser with Mr. Sussman
My name is Marcella Goheen, and I am honored to serve my husband and speak for his disability at this time in history.   Tomorrow, 11/12 will mark EIGHT months since I’ve put my hands on my husband to give essential neuro-motor care that I provided to him in his facility as his accommodation.  Isabella Geriatric Center is my husband’s home. I love Isabella.  It hurts to sue them to establish a reasonable visitation care schedule.  But, I have no choice.  
The options I have at this time are:   

1. Be victimized by a paralyzed systemic discourse - the dance of ambiguous compassionate visitation directives - and watch my husband decline through a video chat - or... 
2. Seek to gain clarity and visitation direction from the courts of justice for the well being of my disabled husband ~ which is his right as a disabled person living in an institution - as someone who is unable to speak for himself….I am his accommodation.

The lawsuit is simple.   To pursue reasonable, lawful visitation that is allowable by federal disability accommodation -- - reasonable compassionate care, essential visitation - as is guided by the current State and Federal Regulations within the pandemic.  Facilities statewide are practicing at their own discretion, per the guidance and oversight of the New York State Department of Health.     The discretion, unfortunately, in my case - is not rooted in what benefits and reflects the needs of the resident.  Thus, the current practice is contributing to accelerated decline from the long-term isolation, separation, and solitary confinement, along with my husband not receiving his accommodation.My husband clinically, medically, psycho-socially, emotionally, spiritually, physically benefits from the care visits I’ve provided for four years.  It delays his rare neuro motor discourse. That is fact.  A COVID-19 Survivor, Eight months in isolation, without my essential care, Robert is and will continue to journey in an accelerated deterioration and decline from his rare neuro-moto process.This is unacceptable.  I will not be complicit  ~ when a simple, humane solution is available ~ and the science driven data shows that the failure to thrive deaths from isolation are more than COVID-19 deaths in nursing facilities at this time.  Isolation is our current public health crisis.    I will not allow my husband to perish from prolonged  isolation because of language, liability wars that have nothing to do with him, and lack of understanding of his rare condition where there are no clinical modules, or assessment definitions to assess him because of his rare disability at this time in history.  This lawsuit will create them.  For him.    He breathes. He is human.  He is deserved as a disabled person, with his rare disability, to be accommodated for his  needs according to the law.The dance that he, as a resident, is being put through, between the pushback of Health Agencies, to Facilities, and back again - is unconscionable.  This liability dance is hurting only hurting one person - and that is my husband.  A great, kind, disabled man, who is unable to speak, but understands everything.    I love you, Robert.  I am proud of you.  It is an honor to be your wife.It is his right to stand up for himself.  To speak for himself.  But, as he is non-verbal ~ I, as his wife and his essential and compassionate caregiver - have to go to court to speak for him and his needs.   Insanity.  It remains an honor and privilege to ask the courts with our Counsel, Mr. Michael Sussman, to intervene to work to establish an unprecedented, humane, compassionate decision in a pandemic, and enforce the law that will satisfy all residents rights laws, disability rights laws for accommodations deserved of a disabled person living in a Residential Facility.I ask this from the Press for Five things:

1. Look up the word Compassionate and Care - because we are, as able humans, while this is used in every current visitation directive - practicing the opposite of these words - and the vulnerable, once again are being dismissed and ignored - when I looked it up: Opposite of Compassionate:   “heartless and indifferent”.   Opposite of Care:  ‘neglect’ ‘
2. Ask, in every way you can - with everyone you know -  for the New York State Legislature to reconvene and vote on the Essential Care Visitor Bills that are on the Floor IMMEDIATELY.  We cannot wait until January, 2020.  I have Appealed to all of our state leaders - to reconvene now to save our vulnerable from this public health crisis - and,
3. Stay tuned for Bobby’s Law - which will speak to this moment - so that no family member ever has to endure this kind of prolonged, cruel, inhumane separation from their loved one again, no matter their rare disability and accommodation --- 
4. Continue to cover and tell our stories - there are over a million families suffering nationwide from this similar dilemma, and our loved ones deserve to be connected to their families and have their supplemental  and essential care provided and voices heard.  Bobby lives.   Live in Bobby Love