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.
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.'"
************************** 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. … *********** See the executive order for references to Michigan law and regulations
In January 2018, the U.S. Department of Health and Human Services issued a report with several other agencies "to identify instances in which the State agencies that administer the State Medicaid program did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities who reside in group homes." [page 3 of the Report] The Federal waiver refers to Home and Community Based Services (HCBS) that are provided to people with developmental and intellectual disabilities who live in community settings rather than in institutions such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). Although blanket assertions are often made that living in community settings is superior in every way to living in an ICF/IID, the safety and oversight of community group home settings are being questioned in this report.
The following is a summary of the report with comments from VOR, a national nonprofit organizations that advocates for high quality care and human rights for all people with intellectual and developmental disabilities. Many VOR members have family members who are residents of ICFs/IID or have needs similar to this population.
***************************
Joint Report from U.S. Department of Health and Human Services’ Office of Inspector General (OIG), Administration for Community Living (ACL), and Office for Civil Rights (OCR):
[This was published in the 2018 Spring edition of the VOR print newsletter , The Voice.]
In January of 2018. three agencies operated by the U.S. Department of Health and Human Services, acknowledged systemic shortcomings in protecting residents of HCBS waiver group homes from incidents of abuse and neglect. The Office of the Inspector General (OIG) determined that up to 99 percent of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. The report stated, “Group Home beneficiaries are at risk of serious harm. OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries at risk of serious harm. These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.”
The report grew out of investigations into under-reporting of critical incidents by group home providers in Connecticut, Massachusetts, and Maine that had been conducted by the OIG in 2015. The reports found drastic under-reporting of incidents resulting in trips to the emergency room and/or hospitalizations by group home providers. Concurrent with those investigations, the Inspector General also looked into critical incident reporting by ICF’s in NY State. That investigation determined that NY’s ICF’s had an excellent record of reporting incidents, and that no actions or recommendations were necessary.
OIG highlighted under-reporting critical incidents of abuse and neglect in privately operated group homes, including “deaths, physical and sexual assaults, suicide attempts, unplanned hospitalizations, near drowning, missing persons, and serious injuries. Critical incidents requiring a minor level of review generally include suspected verbal or emotional abuse, theft, and property damage. For critical incidents that involve suspected abuse or neglect, the HCBS waiver and State regulations also require mandated reporting.” It found that in the states under study, “the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities.”
The report identified four Compliance Oversight Components that “help ensure that beneficiary health, safety, and civil rights are adequately protected, that provider and service agencies operate under appropriate accountability mechanisms, and that public services are delivered consistent with funding expectations.” 1. Reliable incident management and investigation processes; 2. Audit protocols that ensure compliance with reporting, review, and response requirements; 3. Effective mortality reviews of unexpected deaths 4. Quality assurance mechanisms that ensure the delivery and fiscal integrity of appropriate community-based services.
In conclusion, the three agencies proposed that the Center for Medicare and Medicaid Services (CMS): 1. Encourage States to implement comprehensive compliance oversight systems for group homes, such as the Model Practices, and regularly report their findings to CMS; 2. Form a “SWAT” team to address, in a timely manner, systemic problems in State implementation of and compliance with health and safety oversight systems for group homes 3. Take immediate action in response to serious health and safety findings, for group homes using the authority under 42 CFR § 441.304(g).
Comments: Most families who have signed the HCBS Waiver would have had reasonable expectations that the four oversight components listed above were in place all along. The first three of these components are mandatory licensing requirements of Intermediate Care Facilities. As for the “SWAT” teams, isn’t that the job that has been expected of Protection and Advocacy agencies in each state? If not, then what is expected of them by HHS and CMS? And why do these agencies tell us that our loved ones can receive the same level of care in group homes that they receive in ICF’s, and encourage us to leave the ICF’s, when they know that these problems remain unchecked in the HCBS waiver system?
Micki Edelsohn has built 25 group homes in Delaware for people with developmental disabilities, but she is worried about the direction of the disability movement. In testimony before the Delaware Joint Finance Committee on February 21, 2013 she said this:
In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe. The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.” Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
Let us NOT take away options but build on those that work. - See more
at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.PSFY4HJZ.dpuf
...Let us NOT take away options but build on those that work.
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.” Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
Why is the ARC Michigan, an advocacy group for people with developmental and intellectual disabilities, having a hissy fit over two family-initiated projects in southwest Michigan? The ARC Michigan is of the opinion that if the state allows Medicaid funds to pay for services to people with DD who choose to participate in these projects, the state will be going against current trends, departing from current thinking on disabilities, and possibly violating the Americans with Disabilities Act.
This "warning" was issued in two letters from Dohn Hoyle, the Executive Director of the ARC Michigan, to the MDCH. [For an explanation of abbreviations and links to the full text of both letters and the MDCH response, see the end of this post.] The ARC Michigan receives most of its funding from federal and state government grants. [See the ARC's 2012 Annual Report ] Of course the state does not have to ask the ARC for permission before allowing the expenditure of Medicaid funds.
The two family-initiated projects targeted by the ARC Michigan are Benjamin's Hope and AACORN (Autism Agricultural Community Option for Residential Needs). Benjamin's Hope, near Holland Michigan, is a planned community for people with autism spectrum disorder. It is described here on the website of LTO Ventures, a non-profit company that develops communities for people with autism:
"A 40-acre campus designed as a community-based model to provide housing, recreation, vocation and support for 24 residents in six custom-designed homes. It is a private/public model, built with private dollars, and utilizing public funds for direct care. They received 62 applications for the first 8 available residential slots. [emphasis added] The first two residences have been completed, and the community building is nearly done." Four women moved into a licensed group home at Benjamin's Hope in June, 2013. AACORN Farm is still in the development stage but has received non-profit status and is looking for property in Kalamazoo County, Michigan. While residential options are being developed, AACORN has started a vocational program. According to the AACORN website, "Tillers International of Scotts, MI has generously offered to let us use their farm and help care for its animals and gardens, and to have arts and crafts indoors while we are raising funds for a farm of our own…The program will run three days per week with just a few participants while we are breaking it in. In September, the program will be offered four days per week and we will be adding more participants." Here is an article from the Kalamazoo Gazette, 4/8/13, with more about AACORN Farm. It is clear that the years of thought, energy, and planning invested by these families of autistic children are approaching fruition. It is also clear that these two programs have broad community support and plans for residents to be fully engaged in what the broader community has to offer them. So why is the ARC in such a huff?
The ARC is right that these projects go against the current trends and thinking prevalent among government-funded advocacy groups and the government agencies that fund them. Creative ideas for providing services and residential options for those with the most severe and complex disabilities may well be thwarted by misguided and potentially harmful government policies with the support of mainstream government-funded advocacy groups. [See CMS rules limiting choice].
For decades, advocacy groups such as the ARC Michigan have been railing against institutions for people with DD [e.g. Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs/IID], despite the fact that such settings are a legitimate choice for people who need that level of care. For years the ARC Michigan has been chipping away at services and residential options provided in settings that serve more than three or four people with disabilities. The basis for this bizarre policy appears to be the faulty assumption that only by limiting the number of disabled people that associate with each other in one place, can we assure their integration into "the community". Not only is this assumption based on tunnel vision, but it is also predicated on a special interpretation of what constitutes a "community" [See "Integration or Isolation? Defining Community Beyond Bricks and Mortar"]
To these advocates, where and with whom one associates is not a matter of free choice or individual need, but is instead a matter of policy applied generally to all people with disabilities and enforced through government mandates:
"We don’t believe that hiding behind language regarding supporting the housing preferences and choices of people with disabilities (or those of their parents or guardians) would shield any new, additional, segregated developments or its funding from being considered discriminatory as segregating persons with disabilities." …Dohn Hoyle, ARC Michigan, 4/30/13
The ARC Michigan claims that using Medicaid funding to pay for services at Benjamin's Hope, AACORN, and similar programs may violate the 1999 U.S. Supreme Court Olmstead decision interpreting the Americans with Disabilities Act. However, the ARC Michigan's reading of Olmstead is faulty. Olmstead does not support the view that congregate settings are automatically discriminatory against people with disabilities. Instead, it supports individual choice. It does not specifically focus on congregate settings in the larger community, such as group homes. Even if one lumps such settings together with larger facilities and assumes that every licensed setting is an "institution", Olmstead still does not prohibit them:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.
Stated another way:
“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution" [quoting VOR’s Amici Curiae brief]
Personal choices and needs are the governing factors, not the oversimplified criterion advocated by ARC Michigan.
For families living with a severely disabled family member, a utopian vision of a world where everyone, regardless of the nature or severity of their disabilities,can live independently, engage in competitive employment, and live fully integrated lives in "the community" (whatever that means), makes as much sense as a vision of a world where severe disabilities don't exist at all. We need realistic solutions, not over-simplified utopian notions that only serve to limit the range of choices. Creative family and community-based projects that provide specialized services and residential options to people with DD should be encouraged, not prevented from getting the assistance they need to succeed.
*************************** Information on the ARC Michigan: Executive Director: Dohn Hoyle President: Donald Teegarden Board of Directors Contact Information
***************************** Letters from Hoyle to MDCH and MDCH to Hoyle: A short lesson in MichiganSpeak will make reading the letters easier: a CMHSP is a Community Mental Health Service Provider - a local CMH agency that provides services to people with DD and other disabilities. A PIHP is a Pre-Paid Inpatient Health Plan, a regional CMH agency that distributes funding to local CMH's and performs other administrative functions. The AFP is the Application for Participation that assures that PIHP's comply with all relevant federal and state requirements.
Links to full text of Letters: (a) Letter to MDCH from Dohn Hoyle dated 4/10/13
(b) Letter to MDCH from Dohn Hoyle dated dated 4/30/13
(c) Letter to the ARC Michigan from MDCH dated 4/25/13
Harbor House Ministries is a faith-based non-profit organization in Jenison, Michigan, west of Grand Rapids. It provides homes for adults with severe developmental disabilities in three spacious 12-bed group homes. Harbor House also has a large activity center with a therapy pool and many planned community outings and events. From the Harbor House Web site: "Founded by families of adults with severe impairments, we know that
family members are the best advocates for any individual. We work hard
to maintain an atmosphere where family is valued and welcome all the
time. We seek not to replace, but to partner with families in providing
the best care and enriching environment possible."
Disability Scoop, in an article by Michelle Diamont, "Senator Seeks Federal Probe of Group Homes", 3/6/13, reports that the U.S. Senator from Connecticut Chris Murphy has asked for “an immediate investigation into the alarming number of deaths and cases of abuse of developmentally disabled individuals in group homes.”
The article says, "Specifically, Murphy urged Inspector General Daniel Levinson [in the U.S. Department of Health and Human Services] to focus on the 'prevalence of preventable deaths at privately run group homes across this nation,' citing increased privatization of residential services for those with disabilities in recent years."
It goes on to say, "The senator’s request comes in response to a recent series of articles in the Hartford Courant detailing cases of abuse and neglect of those with developmental disabilities at various residential facilities in Connecticut. The newspaper found that there were 76 deaths of those with developmental disabilities between 2004 and 2010 where officials cited abuse, neglect or medical errors…Murphy indicated that similar reports have emerged in recent years from Virginia, New York, Massachusetts, Louisiana and Texas."
This article from the Hartford Courant, "Abuse, Neglect Cited As Factors In Deaths Of Dozens of Developmentally Disabled In State Care" By Josh Kovner, Matthew Kaufmann and Dave Altimari details the Hartford Connecticut Courant's findings in its investigation of abuse and neglect in the state's facilities for people with developmental disabilities, including public and private group homes, nursing homes, and institutions.
According to the article, "The Courant's review of state records associated with the more than 100 deaths revealed systemic flaws in the care of the developmentally disabled, ranging from breakdowns in nursing care to gaps in the training of staff to lapses in agency oversight….
"Developmentally disabled people were scalded to death in bathtubs; were fatally injured in falls while on medication that affected their balance; choked to death on solid food while on ground-food diets; died of illnesses despite showing symptoms for days or even months; and succumbed while being physically restrained... "In 2001, a Courant investigation of deaths of intellectually disabled people in state care identified 36 cases from 1990 to 2000 in which abuse or neglect played a role in the death. The Courant found more than twice as many cases from 2004 to 2011, despite added oversight by the agency now known as the Department of Developmental Services. Now, budget pressures are further straining a system that many believe has reached its breaking point." The article includes links to other articles in the series investigating the care of developmentally disabled people in Connecticut. The VOR Weekly News Update from March 8, 2013 also covers the Disability Scoop story and provides this link to a blog from the Southbury Training School. The blog post urges the state of Connecticut to reconsider its decades-long decision to close admissions to the training school and to see STS as part of the solution to the current crisis in care in Connecticut: "STS is a critically important state asset. On its campus are group-home-style residences as well as medical and dental facilities that serve both its own residential population and many people in the community. Those facilities are staffed by on-site doctors and nurses and by specialists who regularly visit the residents, most of whom have severe and profound levels of intellectual disability and complex medical conditions…
"In response to a court settlement in 2010, the state has stepped up its efforts to encourage guardians to move residents out of STS and into the community-based group-home system. However, there is currently a waiting list for residential placements in that system that is conservatively estimated at more than 1,000. There are not enough group homes for people who need them. "Anyone who agrees to leave STS will be moved quickly to any open or newly built community-based residence. But that means that they are moved ahead of many other people developmental disabilities, who may have been waiting for years for a residential placement. "The result is that ever larger numbers of people are being kept at home with inadequate care or are being placed in nursing homes, which state officials acknowledge do not have the staffing expertise to care for them. "
Here are some interesting tidbits of information from a Third quarter Review of Key Performance Indicators for Community Supports and Treatment Services (CSTS) for fiscal year 2011 to 2012. CSTS is the service arm (as opposed to the administrative arm) of our local Community Mental Health Agency. It primarily serves people with Developmental Disabilities and Mental Illness under a managed care system that mandates that all eligible people who qualify for Medicaid must receive services suitable to their condition.
The report admits to some major problems that I attribute to the poor economy, the atmosphere of hostility toward public employee unions, and an aging workforce that sees early retirement as the best option available: "… there has been an abnormally high retirement rate at the beginning of the calendar (middle of the fiscal year), resulting in significant turnover through all levels in the organization. This turnover can attract new and enthusiastic staff members and it can also result in a relationship disruption for the consumer. Finally, CSTS has had a difficult time competing for exceptional staff due to economic conditions. "
Then there is this:
According to this graph, less than 30% of the developmentally disabled adults (DD.a) who live in the county receive services through CSTS. Some of them might receive services through other agencies, although it is doubtful that many do. Where are the missing 70% of people who, by definition, have significant disabilities, but do not receive services?
Last but not least, there's this:
The report claims that the "organization does an exceptional job serving individuals in a community setting and minimizing the use of a restrictive setting. Those adults who are in restrictive settings require that level of care, a structured milieu and constant supervision and monitoring. "
This means that 16% of adults with developmental disabilities (DDa) who are served by CSTS live in group homes. 84% of those served are in "nonrestrictive settings" and you can bet that most of those live at home with their families. For my sons who need a lot of care and 24/7 monitoring, caregivers who are themselves monitored and given support and backup, a group home is not restrictive. We don't know if the agency is doing an exceptional job until we talk to the families who might want a decent group home for their adult family members to live in, but do not trust the system to provide good care or don't know it is available.
