Labeling Group Homes as "mini institutions" restricts choice and discourages innovation

This is an article from VOR, a Voice Of Reason, published in the Spring 2020 edition of The VOR Voice .

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Homes for Life 

By Micki Edelsohn

On a lovely spring day in 1972, I held my youngest son Robert for the first time not knowing that this little baby would change the trajectory of my life. Birth injuries that occurred during that difficult delivery resulted in Robert suffering significant intellectual disabilities. As the extent of these disabilities slowly unfolded, I knew that Robert’s challenges would be different from his older brother and yet my goals for him were the same. Robert would get the best education possible to reach his full potential and someday hold a job, live in his own home and enjoy life in his community.

In 1989 I had a small dream. I would find a way to raise the funds to build a group home where Robert could live with his peers when he completed his schooling. There were a few group homes in Delaware; but my vision of what a group home should look like was quite different! It should be in a beautiful, safe community near all appropriate amenities. When my first group home was completed other families liked what they saw, and the State of Delaware asked for more. My husband Lanny and I then established Homes For Life Foundation and, thanks to the generous and ongoing support of the Delaware community and friends around the country as well as corporations and foundations, we have built and furnished 25 debt free group homes and purchased two condos. Today one hundred and four deserving men and women now have a safe and comfortable place to live and enjoy life. Their intellectual disabilities range from high functioning with drop-in support to high needs with 24/7 awake staff.

It didn’t take long to appreciate that building the homes was the easy part. Finding caring, dedicated and competent staff would turn out to be the difficult part. Ironically in the 1990’s, as I was fundraising and building four-person group homes, the State of Delaware approached The Arc of Delaware requesting that they become a landlord by providing homes for those with IDD. I was a board member of the Arc of Delaware at the time. When the Homes For Life homes began to multiply we recognized that as an all-volunteer non-profit organization with no staff to provide property management, we voted to deed each property to The Arc of Delaware for $1.00. The organizational arrangement was as follows: 

• Homes For Life would build and furnish the homes.
• Homes For Life then deeded the homes to the Arc of Delaware for $1. The Arc became the landlord responsible for upkeep of the homes, including a maintenance reserve fund.
• The State of Delaware contracted with provider agencies to support the residents living in the homes and compensate the agencies according to the acuity of the disability of the residents in the homes.
• The residents in the homes would always have the right to change provider agencies if they felt that their needs were not met.

When the last home was donated in 2009 the value of the homes was approximately 10 million dollars. Each home was HCBS waivered. Little by little I began to understand CMS and the Medicaid system. The Medicaid funds are the “lion’s share” of lifetime support due to the costs of direct care for persons with IDD. Each home is only as good as the Direct Support Professionals and the managers who, despite inadequate wages, make a house a home.

It was during this time, that I met many other Delawareans whose adult family members were longing for a more independent life. I also became acquainted with The Mary Campbell Center in Wilmington, a 55 bed ICF with amazing amenities for those with higher needs and medical complexities. I found others online like VOR members Tamie Hopp and Jill Barker, and I met people from across the country who shared my views that a “one size fits all” solution would not be sustainable.

In 2011, I was appointed to the President’s Committee for People with Intellectual Disabilities (PCPID). This position gave me more insight into the way services were being allocated, and the ideological direction the agencies administering DD services were taking. At that time CMS began reviewing and changing HCBS regulations. The Administration on Aging and the Administration on Disabilities were combined into the Administration for Community Living (ACL), taking the focus from the needs of the individual to a determination to support a single service model of “community living.” The push to move people from ICFs was well underway, and now various government agencies were shifting again and urging families to keep their loved ones in the family home as a new “alternative.”

I had to accept the sad reality that not only were ICF’s no longer being presented as an option by most states’ departments of disability services, but HCBS waiver models were also being deemed congregate, even 4 person homes. By 2010 our Delaware DDS director was no longer requesting the group home model from Homes For Life. Our group homes were now referred to as “mini-institutions.”

So today, as Robert turns 48, I am no longer a “home builder” but an activist working to ensure that all voices are heard and all housing and work opportunities are valued and receive the funding streams needed to meet all people with IDD, especially those with the highest needs. Those with IDD, regardless of severity, have the right to choose where and with whom they would like to live whether it be in an ICF, a group home, an intentional community, an apartment, a farmstead or in their own home with their family members.

When I first started this journey, I never imagined where it would take me or what wonderful people I would meet along the way. For me, life’s great irony is learning that, although we start out by simply wanting to care and provide for our own very special children, we discover that to do so we must embrace every child.

Abelone Kelley August 14, 2020 0

Michigan Updates for Direct Care Providers and Long-Term Care Facilities during Covid-19 Pandemic, 4/25/20

On April 22, 2020, according to Click-On Detroit, Michigan Governor Whitmer announced a temporary pay raise of $2/hour for direct care workers providing Medicaid-funded in-home behavior health and long-term care services during the Covid-19 pandemic:

“'It has never been more important to care for our most vulnerable residents, and these direct care health workers are risking their lives every day to make sure we continue to flatten the curve,' Whitmer said. 'It is our duty as Michiganders to ensure these front-line heroes have the financial support they need to continue doing their critical work while caring for themselves and their families.'"

The program will apply to services provided between April and June.

“'Every day, caregivers are going into the homes of disabled and elderly residents to help them live with dignity,' said State Sen. Jeff Irwin (D-Ann Arbor). 'These heroes work long hours for low pay and little recognition for the critical care they provide. Thank you, Governor Whitmer, for looking out for these caregivers who are risking themselves to look out for our neighbors in need.'"

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On April 15, 2020, Michigan Governor Whitmer issued Executive Order 2020-50, “Enhanced protections for residents and staff of long-term care facilities” .

A “long-term care facility” means a nursing home, home for the aged, adult foster care facility, or assisted living facility. Licensed group homes for people with developmental disabilities (DD) are adult foster care (AFC) facilities.

Protesters against the governor’s executive orders, including stay home orders, have complained that the governor is acting illegally. They have revived the “Lock Her Up” chant, heard mostly in opposition to female politicians they disagree with.

Executive orders include the legal basis for their use - the Emergency Management Act and the Emergency Powers of the Governor Act of 1945:

“The Emergency Management Act vests the governor with broad powers and duties to ‘cop[e] with dangers to this state or the people of this state presented by a disaster or emergency,’ which the governor may implement through ‘executive orders, proclamations, and directives having the force and effect of law.’ ...Similarly, the Emergency Powers of the Governor Act of 1945 provides that, after declaring a state of emergency, ‘the governor may promulgate reasonable orders, rules, and regulations as he or she considers necessary to protect life and property or to bring the emergency situation within the affected area under control.’ ....”

Excerpts from EO 2020-50

I. Protections for residents of long-term care facilities

1. Notwithstanding any statute, rule, regulation, or policy to the contrary, a long-term care facility must not effectuate an eviction or involuntary discharge against a resident for nonpayment, nor deny a resident access to the facility, except as otherwise provided in this order.

2. A long-term care facility must not prohibit admission or readmission of a resident based on COVID-19 testing requirements or results in a manner that is inconsistent with relevant guidance issued by the Department of Health and Human Services (“DHHS”).

3. The following apply to a resident that obtained housing outside of a long-term care facility, including but not limited to living with a family member, during the declared states of emergency and disaster:

(a) The resident does not forfeit any right to return that would have been provided to the resident under state or federal law had they been hospitalized or placed on therapeutic leave.
(b) The long-term care facility of origin must accept the return of the resident, provided it can meet the medical needs of the resident and there are no statutory grounds to refuse the return, as soon as capacity allows.
(c) Prior to accepting the return of such a resident, the long-term care facility must undertake screening precautions that are consistent with relevant DHHS guidance when receiving the returning resident.

4. Nothing in this order abrogates the obligation to pay or right to receive payment due under an admission contract between a resident and a long-term care facility.

5. All long-term care facilities must use best efforts to facilitate the use of telemedicine in the care provided to their residents, including, but not limited to, for regular doctors’ visits, telepsychology, counseling, social work and other behavioral health visits, and physical and occupational therapy.

II. Protections for employees and residents of long-term care facilities

1. It is the public policy of this state that employees of long-term care facilities or regional hubs who test positive for COVID-19 or who display one or more of the principal symptoms of COVID-19 should remain in their homes or places of residence, as provided in section 2 of Executive Order 2020-36 or any order that may follow from it, and that their employers shall not discharge, discipline, or otherwise retaliate against them for doing so, as provided in section 1 of Executive Order 2020-36 or any order that may follow from it.

2. Long-term care facilities must:

(a) Cancel all communal dining and all internal and external group activities throughout the duration of the declared states of emergency and disaster;
(b) Take all necessary precautions to ensure the adequate disinfecting and cleaning of facilities, in accordance with relevant guidance from the Centers for Disease Control and Prevention (“CDC”);
(c) Use best efforts to provide appropriate personal protective equipment (“appropriate PPE”) and hand sanitizer to all employees that interact with residents;
(d) As soon as reasonably possible, but no later than 12 hours after identification, inform employees of the presence of a COVID-19-affected resident;
(e) Notify employees of any changes in CDC recommendations related to COVID-19;
(f) Keep accurate and current data regarding the quantity of each type of appropriate PPE available onsite, and report such data to EMResource upon DHHS’s request or in a manner consistent with DHHS guidance; and
(g) Report to DHHS all presumed positive COVID-19 cases in the facility together with any additional data required under DHHS guidance.

III. Procedures related to transfers and discharges of COVID-19-affected
residents

1. A long-term care facility must report the presence of a COVID-19-affected resident to their local health department within 24 hours of identification.

2. A long-term care facility must transfer a COVID-19-affected resident who is medically unstable to a hospital for evaluation.

3. A nursing home with a census below 80% must create a unit dedicated to the care of COVID-19-affected residents (“dedicated unit”) and must provide appropriate PPE, as available, to direct-care employees who staff the dedicated unit. A nursing home provider that operates multiple facilities may create a dedicated unit by dedicating a facility for such a purpose.

4. A long-term care facility must adhere to the following protocol with respect to a COVID-19-affected resident who is medically stable:

(a) If the long-term care facility has a dedicated unit and provides appropriate PPE to the direct-care employees who staff the dedicated unit, the facility must transfer the COVID 19-affected resident to its dedicated unit.
(b) If the long-term care facility does not have a dedicated unit or does not provide appropriate PPE to the direct-care employees who staff the dedicated unit, it must transfer the COVID-19-affected resident to a regional hub, if one is available to accept the resident. If no regional hub is available to accept the transfer of the COVID-19-affected resident, the long-term care facility must attempt to send the resident to a hospital within the state that has available bed capacity. If no hospital will admit the COVID-19-affected resident, the long-term care facility must transfer the resident to an alternate care facility.

5. Once a long-term care facility resident who has been hospitalized due to onset of one or more of the principal symptoms of COVID-19 becomes medically stable and eligible for discharge in the judgment of the resident’s medical providers, a hospital must discharge the resident in accordance with the following protocol:

(a) If the long-term care facility where the resident resided prior to the onset of one or more of the principal symptoms of COVID-19 (“facility of residence”) has a dedicated unit and provides appropriate PPE to the direct-care employees who staff the dedicated unit, the hospital must discharge the resident to their facility of residence for placement in the dedicated unit, provided there is available bed capacity.
(b) If a discharge in accordance with section 5(a) of this part is not available, the hospital must discharge the resident to a regional hub, provided there is available bed capacity.
(c) If a discharge in accordance with section 5(a) or 5(b) of this part is not available, the hospital must transfer the resident to any alternate care facility with available bed capacity in accordance with the following protocol:

(1) Any alternate care facility within the state that has available bed capacity to receive the resident must accept a transfer authorized by this order.

(2) An alternate care facility must discharge a long-term care facility resident to the facility of residence as soon as capacity allows. If the facility of residence lacks available capacity, the alternate care facility must transfer the resident to a regional hub. If a regional hub receives a resident under this part, it must transfer the resident to the facility of residence as soon as capacity allows.

6. For any transfer or discharge of a resident, the transferring or discharging entity must ensure that the resident’s advance directive accompanies the resident and must disclose the existence of any advance directive to medical control at the time medical control assistance is requested.

7. Any long-term care facility that has a dedicated unit and provides appropriate PPE to the direct-care employees who staff the dedicated unit must admit anyone that it would normally admit as a resident, regardless of whether the individual has recently been discharged from a hospital treating COVID-19 patients.

8. A long-term care facility that transfers or discharges a resident in accordance with this order must notify the resident and the resident’s representative of the transfer or discharge as soon as practicable.

9. A transfer or discharge of a long-term care facility resident that is made in accordance with this order constitutes a transfer or discharge mandated by the physical safety of other facility residents and employees as documented in the clinical record,…and constitutes a transfer or discharge that is necessary to prevent the health and safety of individuals in the facility from being endangered…

10. To the extent necessary to effectuate this terms of this order, strict compliance with any statute, rule, regulation, or policy pertaining to bed hold requirements or procedures, or to pre-transfer or pre-discharge requirements or procedures, is temporarily suspended. …

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See the executive order for references to Michigan law and regulations

Abelone Kelley April 25, 2020 0