Panel Discussion: Ensuring Beneficiary Health and Safety in Group Homes

Panel Discussion: Ensuring Beneficiary Health and Safety in Group Homes


>>Tesia Williams: Good morning, and welcome
to the panel discussion, Ensuring the Health and Safety of Beneficiaries in Group Homes. My name is Tesia Williams, Director of Communications
at the Department of Health and Human Services, Office of Inspector General. Community based long-term services and supports
in residential settings, such as group homes, provide many individuals with greater independence,
integration into the community, and access to opportunities. But it is crucial these individuals receive
safe, quality care, and are treated with respect. In a series of audits conducted by the Department
of Health and Human Services, Office of Inspector General, OIG found that in group homes that
group home residents with the developmental disabilities often experienced serious injuries
that resulted in emergency room visits. OIG also found that states often failed to
report these critical incidents to law enforcement as required. OIG determined that more comprehensive systematic
tools are needed for states to address these troubling findings. Therefore, the agency teamed up with the Administration
for Community Living and the Office for Civil Rights to write a joint report which provides
suggestions on how states can protect individuals in group homes. With us today are the authors of the report. From left to right, representing the Administration
for Community Living is Jennifer Johnson, the Deputy Director of the Administration
on Intellectual and Developmental Disabilities in the Administration on Disabilities, also
known as AIDD. In this capacity she provides overall leadership
of the ACL Programs and activities related to people with intellectual and developmental
disabilities, including the Developmental Disabilities Assistance and Bill of Rights
Act, and the President’s Committee for People with Intellectual Disabilities. Prior to this role, Dr. Johnson served as
the Director of AIDD’s Office of Program Support. Representing the Office for Civil Rights is
Principal Deputy Director Robinsue Frohboese. While serving in this role Dr. Frohboese has
spearheaded a number of disability rights and community integration efforts for the
department, including OCR’s major enforcement actions and guidance documents in the White
House New Freedom Initiative in 2001 through 2009 to break down barriers to community living. She began her federal career working as a
staff attorney on disability rights for the U.S. Senate’s Health Education Labor and Pensions
Committee. She also served as a consultant to the National
Association of Developmental Disabilities Counsel and the President’s Committee of Persons
with Intellectual Disabilities. Representing the Office of Inspector General
is Megan Tinker, the Senior Advisor for Legal Review. Ms. Tinker advises the OIG on jurisdiction
and oversight issues under the IG Act, as well as on healthcare fraud and compliance
matters in Medicaid, Medicare, and grant programs. Working in the Office of Counsel she also
advises OIG executives on complex and sensitive matters providing legal advice and representation
on a wide range of issues dealing with fraud, waste, and abuse in HHS programs and grants. And we are joined by a representative of the
Centers for Medicare and Medicaid Services, which has a federal role in the oversight
of group homes. Tim Hill is the Deputy Director for the Center
for Medicaid and Children’s Health Insurance Program Services. As Deputy Director of CMCS he leads activities
related to national Medicaid and CHIP policy and program operations and works closely with
states in the implementation of their Medicaid and CHIP Programs. Mr. Hill has an extensive background in financial
management, program integrity, and state collaboration. Moderating this event is Anne Rohall, Attorney
Advisor in OIG’s Congressional Affairs Office. She is a parent of a child with a developmental
disability and has previously worked with the Disability Advocacy Community. Anne?>>Anne Rohall: Good morning, everybody. Thank you, Tesia. Just a few housekeeping notes; after our panel
discussion we will have a question and answer session for everybody. And there will be two microphones going around
the audience so feel free to jot down your questions as we proceed. Thank you, everybody, for coming out today. I know the weather wasn’t that great. As Tesia mentioned I have a child with a developmental
disability. She has Cerebral Palsy, Epilepsy, and chronic
Kidney Disease and is facing a kidney transplant very soon. However, she is receiving Medicaid under a
Home and Community based Waiver and is thriving in her home and doing great. So, as you can imagine this panel discussion
is moving to me, both as a person and as a professional. As I look out at the audience, I see many
faces in the disability community who were with me in the trenches back in 2005, ironically
just a few months before my twins were born, working on the Deficit Reduction Act, which
provided many, many benefits to people with disabilities to allow them to live in their
homes. And some of you old timers remember the late
’90s when we were working on the Olmstead Decision that would — truly was one of the
most important civil rights cases in our — in our recent, you know, in our times I guess. I just wanted to thank our hill colleagues
for coming out and carving out time for this important issue. I know you have a lot on your plates. I want to give a shout out to the disability
advocates who have been in the trenches working this for the past at least 20 plus years. And most importantly too the Office of Inspector
General and too, our HHS colleagues for showing us what good government is all about and for
helping us to fix this nationwide epidemic. So, thank you. We’re going to get started. I’m old as you can see. Put my glasses on. [laughter] Okay panelists, briefly explain the role of
your organization and efforts to improve health and safety outcomes for people with disabilities
living in group homes. And Megan, we’ll start with you, Inspector
General’s Office.>>Megan Tinker: So, the HHS Office of Inspector
General is an independent and objective oversight body that fights fraud, waste, and abuse and
promotes efficiency, economy, and effectiveness in HHS programs and operations. As a result, health and safety issues for
HHS beneficiaries are a critical part of our mission.>>Anne Rohall: Okay, thank you. Robinsue?>>Robinsue Frohboese: Thanks. The Office for Civil Rights is actually a
law enforcement office within the Office of the Secretary. And we are responsible for ensuring that programs
and services that receive federal funds from HHS do not discriminate on the basis of disability,
race, color, national origin, age, or sex. And that they protect the exercise of conscience
and religious freedom. We also are responsible for protecting the
— both the privacy as well as security of individually identifiable health information
under HIPAA. So, we have a broad range of authority. But in terms of our specific responsibilities
in disability rights we are responsible for enforcing Section 504 of the Rehabilitation
Act, as well as Section 1557 of the Affordable Care Act. And we share jurisdiction with our colleagues
at the Department of Justice. And I see some of those colleagues are here
today. And an important part of our work under Title
II of the Americans with Disabilities Act, of course, is Olmstead enforcement and ensuring
integration of individuals in the community.>>Anne Rohall: Great, thank you. How about we go to Jennifer, ACL.>>Jennifer Johnson: Hi, the Administration
for Community Living, I think, represents the program side of this work group. We advocate for older adults, people with
disabilities, their family members, and caregivers. And we fund a wide range of programs that
support community living opportunities for those populations in the states and territories. We invest in training and education, research,
and innovation that all works towards creating greater community living opportunities for
older adults, people with disabilities, their family members, and caregivers. We also advocate for continued expansion and
coordination of home and community-based services, as well as improvements in quality. So, people who are older and people with disabilities
have greater choices in where they live and how they receive long-term services and supports
in the community. In terms of our programs, drilling down a
little bit into the DD population, ACL funds national grant programs in each state and
territory. That worked towards addressing issues related
to the health, safety, and well-being of people with developmental disabilities. One of those programs is our Protection and
Advocacy Agencies that, again, are in every state and territory. And some of the things that they do is monitoring
of incidents of abuse and neglect. And also conducting investigations if they
believe there has been an incident of abuse or neglect. And then if they do identify that working
with states or residential settings to correct those issues. Our protection and advocacy agencies, which
we P&A’s for short, alongside our University Centers for Excellence in Developmental Disabilities
and our state councils on developmental disabilities are really driving forces in the states and
territories towards systems change and, again, creating greater opportunities for community
living. Our grantees carry out a wide variety of activities
that really work towards reducing the incidents of abuse and neglect. Just to give you a few examples of those;
our programs do things like training of individuals with developmental disabilities, so they are
better able to identify if abuse is occurring, and then also giving them mechanisms for reporting
that. We have programs that do training of direct
support providers, so they can build their capacity, not only to better support individuals
to live in the community, but also to recognize when abuse is occurring. And we also fund training of leaders, future
leaders in the field, so that we can create better systems of support for community living.>>Anne Rohall: Great, thank you. And Tim?>>Tim Hill: Thanks. Well, as you know CMS jointly funds Medicaid
with the states. And each state has a large amount of flexibility
in designing and implementing their programs. Because the health and safety of Medicaid
beneficiaries is top priority for CMS we work in partnership with states to ensure the health
and welfare of all individuals receiving home and community-based services, particularly
and including folks who — with disabilities who are receiving services through group homes. We have a wide array of things that we do
but I characterize our work on this front along sort of three broad fronts. First as an enforcement matter, right? We’re approving and overseeing ATBS waivers
that are being submitted by the states. And as part of those waivers we require health
and safety assurance plans and reporting on the part of the states to be sure that they
are doing and fulfilling their responsibilities and obligations to protect the health and
safety of beneficiaries who are in these waivers. And we require that reporting on an annual
basis, we require it and oversee it as part of the five-year annual renewal processes
for waivers or as new waivers come in. So, there’s a significant effort that we put
in place to be sure that states are complying and sort of being sure that they’re doing
all they need to do under the waiver to protect the care of the beneficiaries we serve. At the same time and sort of congruent to
that we have two other things that we do. First, we provide as much TA as we can to
states to be sure that we provide information and help the states trying to be in compliance
and ensure that they’re doing all the things that they need to do to be in compliance with
their waiver conditions. And this can take the form of sub-reg guide
— sub-regulatory guidance, regulatory guidance, TA letters. We do enforcement letters that form a basis
for compliance plans for states and help them to come into compliance and stay in compliance
with our requirements. And finally, we view ourselves as having a
very large information sharing and collaboration of all with the states. So, we deal individually with states and their
particular waiver issues. At the same time, we try and create space
for collaboration and communication across states and with us through webinars, through
work groups, through sort of issue specific phone calls so that best practices can be
learned and transported from one state to another. And that we can make sure that they have all
the information that they can to protect the health and the safety of the beneficiaries
that we serve.>>Anne Rohall: Excellent, thank you. I’d like to direct this next question to my
colleague, Megan, in the Office of Inspector General. Can you tell us what prompted the OIG to take
a look into these incidents in group homes, residents of group homes?>>Megan Tinker: Thank you, Anne. Originally, we received a Congressional request
from one of the senators in Connecticut. He had seen several media reports about abuse
and neglect in group homes in his state and asked us to take a deeper look. When we looked at Connecticut what we found
was troubling, both in terms of the incidences of abuse and neglect that we saw, but also
in the lack of reporting of critical incidents in group homes. As a result, we decided to expand our work. And initially we expanded it to include Massachusetts
and Maine and we are going to continue expanding that work and currently are looking at six
additional states in terms of that work. As we looked at those critical incidents and
the lack of reporting by states to investigators and whatnot in the states that we saw, what
we realized was that this was a larger sort of more systemic issue and not limited to
the states we were looking at. And, as a result, we wanted to do more and
think about what larger picture fixes could we find that we could really help other states
across the country to implement so that better health and safety outcomes for group home
beneficiaries could be achieved.>>Anne Rohall: Okay, thank you. And a follow question to that; when you talk
about critical incidents affecting people with developmental disabilities in group homes,
can you sort of help us understand what that means or define it for us?>>Megan Tinker: Absolutely. So, critical incidents are cases of potential
or actual harm to beneficiaries such as abuse, neglect, and exploitation. And they can include injuries and like broken
bones, burns, physical assault, et cetera. In doing these reports it’s important to note
that when we looked at critical incidents we did not actually make determinations of
abuse and neglect. What we looked at was whether or not when
potential abuse and neglect occurred in the form of these critical incidents, did states
take the appropriate actions to identify, investigate, correct, and take actions necessary
to determine if they were, in fact, abuse and neglect and appropriately address those
issues.>>Anne Rohall: Okay, thank you. So, we had audit findings that uncovered some
pretty serious issues. And then it prompted ACL OCR and OIG to develop,
I guess, a joint paper. Can you talk to us about that joint paper
and some of the key takeaways that that contained?>>Megan Tinker: Absolutely. As I mentioned before when we looked at those
three reports together what we realized was that it was sort of the tip of the iceberg
in terms of a much larger systemic problem that we had significant concerns about. But we wanted to make sure that we gathered
together as much expertise across the department as possible. So, we reached out to ACL and to OCR. And we also sought technical assistance from
CMS, from the Department of Justice Civil Rights Divisions, and reached out to some
of the partners that we have at the national level in the DD community. To really gather together as much expertise
as possible on these issues and to think about and brainstorm what a good systemic fix would
be in this particular setting. In doing that we met as a group for over a
year and a half and developed these model practices, which are really at the heart of
the joint report. From my perspective the joint report really
demonstrates good government at work. It is a group of people with expertise across
government with different lenses on this particular issue coming together to develop a systemic
response, comprehensive, compliance oversight for states to implement to really drive better
health and safety outcomes for group home beneficiaries. What we found really was that often states
had good policies and practices in place but there were gaps in those systems or they lacked
transparency and accountability. And, as a result, the model practices that
we put together we hope will act as a toolbox for states and a roadmap to help them fill
in those gaps and really drive those better health and safety outcomes for beneficiaries. I’m very proud of this work and having the
opportunity to work so closely with ACL and OCR and to have had the benefit of CMS’s technical
assistance, as well as the Department of Justice. And our hope really is that we are empowering
states and advocates to really result in much better outcomes.>>Anne Rohall: That’s great, thank you. And I guess a follow up to Robinsue in OCR
and Jennifer in ACL, can you talk a little bit about how you joined with OIG? I know that you all were in collaboration
but when did this come about? And can you talk a little bit about how it
played out for you guys?>>Robinsue Frohboese: Sure. However, if I start –>>Anne Rohall: Okay.>>Robinsue Frohboese: — because I well remember
— [laughter] — the day a year and a half ago when Megan
called me up and met with me to discuss the concerns that you were finding in your investigations
of group homes. These are issues that I personally and professionally
feel very passionately about, both in the 17 years that I worked at the Civil Rights
Division in justice and then coming to OCR, these issues really are at the crux of our
work in ensuring adequate and appropriate services for individuals in the community. So, throughout my tenure here at HHS OCR has
really had a longstanding history of working very closely with CMS, with ACL and its predecessors. But I must admit that the Office of Inspector
General was an entirely new partner. And the fact that you were energized around
finding positive, constructive solutions and doing it in a way that brought in relevant
components. And the department was just an incredible
opportunity that we had to seize. And as Megan said really I think is an example
of government at its best — each of us bringing the perspectives of our various components
and coming up with a very comprehensive document.>>Anne Rohall: Yeah, you’re absolutely right. And just to comment on that we often get accused
of not talking to each other. And this is — truly is government collaboration
at its finest. Jennifer?>>Jennifer Johnson: Yeah, so I think ACL
joined the effort for many of the same reasons. Our programs deal with these issues on a daily
basis in the states and territories as I described a little bit earlier. And so, we really saw this as a great opportunity
to bring national attention to the issue of abuse and neglect of, again, we’re very aware
that it occurs, and it occurs in a variety of settings. So, to have the opportunity to work on the
federal level with different partners on this issue was very important to us. We also found it as an opportunity to bring
greater focus to the issue of incident monitoring as one of the strategies, not the only strategy,
but one of the strategies that can be used to ensure the health, safety, and well-being
of individuals with developmental disabilities. And as I mentioned our grantees are working
in the states and territories, our protection and advocacy agencies, our university centers,
interstate DD councils on these issues. But they’re also working with states in productive
and constructive ways to try and build better systems for individuals and expand the options
for community living and there are resources to the states in many ways in that regard. Just to give you some examples of some of
the things that they are doing currently in the states as — to help in this area. Our Washington State Protection and Advocacy
Agency receives funding from the state for what is called the Washington Developmental
Disability Ombuds Program. And part of that program includes systemic
level monitoring, investigations, and identification of incidences of abuse and neglect. And we believe this is a model that can be
replicated elsewhere and is a resource that can be used for implementing these model practices. We also have university centers in states
like Michigan and Pennsylvania that are assisting states by monitoring people who are living
in the community. And then we have several DD councils like
the ones in California, Hawaii, and Virginia that are working at the state level with policy
makers to develop more comprehensive policies that will help put in place greater options
for community living. And in that way reducing the incidence of
abuse and neglect because we know that if people are more isolated they’re at an increased
risk for abuse and neglect. And if we can create better options for community
living we, therefore, reduce that possibility of abuse and neglect to occur.>>Anne Rohall: Great, thank you. Robinsue, I wanted to follow up with you. The joint report had some recommendations
and you talked in your opening remarks about some of your enforcement responsibilities
and also your work under the Olmstead Decision. I was wondering if you could sort of talk
about your perspective about how you’re going to fit those recommendations into your overall
portfolio. And maybe just give the audience, for those
who aren’t aware, just a little bit of an introduction to the Olmstead Decision that
I referenced in my opening.>>Robinsue Frohboese: Sure, thank you because
there really is a very direct link between the important recommendations in this report
and the model practices and the Olmstead Decision. The Olmstead Decision was a Supreme Court
decision that affirmed the rights of individuals with disabilities to live in the most integrated
setting appropriate to their needs. And so, in order to ensure effectuating that
right it’s, of course, critical that there are adequate resources and supports to develop
and provide community services. And as part and parcel of that I think just
at the very outset as a fundamental core and a starting point in order for community options
to be a meaningful choice at a very minimum they have to, in fact, protect the health
and safety of individuals, ensure their well-being, and protect their civil rights. And so, their civil rights to live in the
most integrated setting are very much a part of that right. And so, you’ll see in the recommendations
in the report that one of the factors that’s included is specifically inclusion in the
community. Because although someone may be living in
a group home in the community, as Jennifer points out, even community experiences can
be isolating and ensuring maximum integration in the various options. But, again, I think at its very essence in
order for any services to be meaningful they do at the outset have to protect the health
and safety of individuals.>>Anne Rohall: Great, thank you. I’d like to direct this next question to Tim
at CMS. The joint report talks about three states,
Connecticut, Massachusetts, and Maine. And I know that many advocates are wondering
if CMS has engaged with those three states. And can you tell us a little bit about how
that’s playing out from your perspective?>>Tim Hill: Sure, absolutely. As with any of our work with the IG and the
work that they send to us we take all the findings seriously. And, as the work continued, we met with the
states and made sure that they had corrective actions in place in response to the specific
reports that the IG had done for each of the states. And we monitor their compliance and their
corrective actions. We’ve recently sent out updated letters to
the states in part and parcel with the release of the report and are tracking to be sure
they’re on track with the compliance actions. I think as important, maybe even more important
from a systemic standpoint, as Megan pointed out we’re worried about systemic problems. So, it’s three states in New England where
we’ve — where we’ve looked at these problems. We want to be sure that to the extent there
are lessons learned there are things that have happened in those states that we can
be sure we can pass that along and ensure compliance in other states that we’re building
in, as I said, to our ongoing TIA [spelled phonetically]. We’ve committed to doing greater sub-regulatory
guidance to discuss some of the models that we’ve talked about here to be sure that the
findings that we’ve seen in these states to the extent that they’re occurring elsewhere
we get them corrected. And to the extent that they are not we give
the — as many tools as we can to the states to prevent them from occurring in the future.>>Anne Rohall: Great. And I guess along those lines of I think a
lot of people are thinking about this as a systemic problem, just based on what’s been
uncovered. Megan, for you we’re looking at group homes
right now. Why the focus on group homes as opposed to,
let’s say, other residential facilities and beneficiaries in those facilities who receive
Medicaid?>>Megan Tinker: Well, first and foremost
we began looking at group homes because we had received a request, a Congressional request,
from the senator from Connecticut. But I’d like to point out that group homes
themselves are really not the problem. The issue here is that health and safety in
all settings is absolutely critical for those to be meaningful services. As a result of our group home work we’ve actually
expanded our work and started to look at skilled nursing facilities as well in the Medicare
setting. And looking again at these critical incidents
and published recently an early alert that provides some of our initial findings on those
issues. In addition, I would note that recently a
JAO [spelled phonetically] report came out on assisted living facilities, which also
looks at health and safety and abuse and neglect issues in that particular setting. Group homes and other community settings are
very important, and they are part of making sure that disabled individuals have an integrated
community option that they have greater independence and options and choices. However, as Robinsue was pointing out, it’s
critically important that in all settings beneficiaries of our programs receive quality
care and can be assured that their health and safety is being taken seriously.>>Anne Rohall: Okay, thank you. When I read the model practices, and I’m sure
folks in the audience too, there’s clearly a focus on transparency and reporting practices. And could you help us understand how does
reporting actually help the people living in the group homes who are exposed to some
of these dangers?>>Megan Tinker: Absolutely. So, the focus of the four model practices
is, in fact, on reporting. And it’s looking at first and foremost how
do we identify a critical incident? How do we then make sure that it’s investigated? How do we then, after it’s investigated, appropriately
correct for those critical incidents, both on a specific incident level but also on a
larger systemic level if it has a specific trend. So, if it’s not an isolated incident what
else do we do to make sure that appropriate training and correction is happening? Finally, transparency and accountability are
also critically important. In the three states that we looked at one
of the things that we noticed was that, again, while the policies and procedures states had
in place looked good on their face, once we had boots on the ground and were really looking
at all of the data, what we found is that often those policies and procedures were not
actually being followed, which is why the transparency and accountability is so critical. Because without being able to easily see that
policies and procedures aren’t being followed, we cannot assure that critical incidents are
being properly addressed. And that actions are being taken that are
necessary to decrease the number of critical incidents that occur in the future.>>Anne Rohall: Okay great, thank you. The joint report has suggestions Tim, not
recommendations but suggestions. Does CMS agree with those suggestions in the
report?>>Tim Hill: Yeah, absolutely.>>Anne Rohall: Can you talk just about that?>>Tim Hill: We found the report to be helpful
in terms of helping us think through what we can do to help make sure that states are
fulfilling their commitment to the health and safety of our beneficiaries in any way
possible. We’re working to distribute the tools, the
information, other necessary assistance to states to ensure that they are protecting
the safety of our Medicaid beneficiaries. We support the model practices. We intend on issuing sub reg — sub-regulatory
guidance, more technical assistance to states to implement those model practices that were
developed as part of the IG’s work. And we believe they’re going to be helpful
for states, not just the states that they found in the report but all states. As I identified earlier we want to be sure
that information is useful to all states in these HCBS settings. We’re also very anxious to begin the swat
team element of the recommendations in the report. We agree sort of as a partnership with the
team has been identified here. It’s been good work for us and we want to
continue that. We’d begun the beginning phase of that working
with our partners here, with our staff in the regional offices, and we’d be interested
in thoughts from the community about the best way to approach that and the best way to distribute
resources in a way that would be most efficient and the way that would be most effective. And finally, with respect to taking enforcement
actions in response to these concerns, you know, we — states have to make certain assurances,
I’ve said earlier, in terms of their reporting and the systems that they put in place when
they report. We have a number of compliance actions that
we can take if states are not adhering to these requirements, if they don’t have the
systems in place, if they’re not using the systems. The HCBS Rules that we publish in 2014 gave
us new tools, particularly financial tools, to be sure that if states were not in compliance
or if their corrective actions were not sufficient if we felt that they weren’t taken seriously
their commitment to implement those provisions that we could do more from a financial perspective
and an oversight perspective to be sure that states came into compliance.>>Anne Rohall: Okay great, thank you. I’m sure for many advocates and for our hill
colleagues the question of funding is always an issue. I guess, Megan, I’ll address this to you. The — their model practices that are laid
out in the joint report will there be more funding required to implement those or to
make them a reality? And does the Federal Government, in your mind,
intend to give states additional money to implement the practices? Can you just talk to us about that piece of
it?>>Megan Tinker: Absolutely. Again, what we found in our initial reports,
our initial audits, really was that states already had most of the policies and practices
in place that we would expect to see, but that they weren’t fully implementing and following
them. In addition, as Tim pointed out, Medicaid
is a shared responsibility between both the Federal Government and the states, and is
jointly funded as a result, both in terms of the actual provision of services, as well
as the administration of those programs. What we’ve looked at in the model practices
actually builds on, not only the policies and practices that states already have in
place, but the requirements under their HCBS waivers that they already are required to
provide assurances to CMS on but provide a much more detailed level of how do you go
about doing these things? What does a roadmap here look like? And what does true compliance oversight in
this particular setting look like?>>Anne Rohall: Okay, thanks. That’s really helpful. And a follow up question for — there are
many disability advocacy organizations in the audience today. What advice could you give some of those folks? Or beneficiaries or families or individuals
who want their state to adopt these model practices?>>Megan Tinker: Well, as with any public
policy issue you can contact your state government representatives, your governor’s office, your
state Medicaid director to talk with them about the importance of things like the model
practices and assuring health and safety in these populations.>>Anne Rohall: Okay, great. Something that has — I — it’s come across
my desk just as a parent of a child on a — on a home and community-based waiver in Medicaid
that the discussion about how the Olmstead Decision, which really provided for people
with disabilities to live in their communities and to thrive. How do you respond — I’m going to direct
this to you Robinsue, with OCR, to the concerns that some of these deficiencies that we’re
seeing in group homes could possibly undermine, you know, some of the civil rights efforts
for — that we’ve been working on for decades for people to be living in the most integrated
setting? Can you just sort comment about that? I think Megan touched on it a little bit earlier,
but –>>Robinsue Frohboese: Absolutely. And thank you actually, Anne, for returning
to that and underscoring it because I do think it’s a very important issue to understand
— that this report and the model practices that are contained in it are not an indictment
of community living and the Olmstead Decision.>>Anne Rohall: Right.>>Robinsue Frohboese: These issues as we,
unfortunately, know all too well have been around as longstanding issues for decades. And they are issues that have emerged in — particularly
in congregate care settings and group homes are no exceptions.>>Anne Rohall: Right.>>Robinsue Frohboese: So, it — it’s the
practice of the Office for Civil Rights when we receive complaints about Olmstead to incorporate
in our corrective measures and in our settlements. Really the same elements that are in the recommendations
in this report of ensuring that states have adequate procedures in place, and quality
assurance mechanisms to ensure that those procedures are being implemented and all towards
the aim, of course, of having a system that can prevent at the outset abuse and neglect
and ensure health, safety, and well-being. And I know that the Department of Justice
because OCR has actually entered into joint agreements with the DOJ routinely and all
of its consent decrees also has a component of the decree that focuses on these quality
assurance mechanisms because they’re key. Again, the right to live in the community
is meaningless if the — if services are not adequate and, at a very base, protect the
health and safety. So, both the Department of Justice and the
Office for Civil Rights have been approaching this problem on a complaint by complaint or
state by state basis. So, it’s a bit of a — it’s been a bit of
a piecemeal resolution. And I think that this effort represented the
ability for each one of our agencies and, certainly, the Department of Justice was right
there in terms of sharing its experiences, its subject matter, expertise, and technical
assistance and so was a critical part of this. And comprehensively coming up with one set
of recommendations that we are suggesting can be implemented, and should be implemented,
nationwide in every state. And so, it’s really maximizing from the law
enforcement perspective, from implementation of Olmstead, a very powerful way to get information
to states about model practices.>>Anne Rohall: Great, okay. Follow up question for Tim at CMS and for
you, Jennifer, for ACL. I know that a lot of people here think this
a very basic question. You know we’ve moved our people out of institutions
and into the home and the community. But just for folks that may not be sort of
aware of this — the disability movement could you talk Tim, and then you, Jennifer, about
the benefits of — and the merits of group homes and why it’s important from your agency’s
perspective.>>Tim Hill: I think it’s an important question. And, you know, we — when we think about for
us our beneficiaries who are in HCBS settings what we think of that is the — is settings
at a — as a general matter, right? We’re looking to create a sense of independence,
community, culturally responsive places for our beneficiaries to thrive. And what we’re trying to do is create an infrastructure
through these waivers where states can design their programs to meet the needs of those
beneficiaries’ group homes is an important setting that has a place where people can
feel independent, where folks can get the services they need in a way that they feel
is going to be responsive. But we think it’s, you know, we want to drive
toward individuals being able to make those decisions and so we don’t think necessarily
about group homes or any other setting it’s what’s the system that we can put in place,
that a state can put in place, to be sure that beneficiaries are getting access to the
services in a way that can make them feel independent. It’s important, the work here is important,
to be sure that the folks, whether it’s in a group home or another setting, feel safe
and feel like they’re getting the care that they need.>>Anne Rohall: Okay, great. And Jennifer, I know this is right up your
alley. [laughter]>>Tim Hill: Right [laughs].>>Jennifer Johnson: Well, I appreciate you
raising the concerns about group homes and whether they’re an adequate place for people
to live in the community, as well as the role of group homes in supporting people to live
in the community. And as was pointed out group homes are not
the problem here. And that we know abuse and neglect can occur
in any type of setting. It can occur in institutional settings, it
can occur in skilled nursing facilities, as well as home and community-based settings. So, we know these things based on the work
that OIG has done and the investigations they have done of different types of residential
settings. And we know this based on the work that our
protection and advocacy agencies have done to investigate institutions, and where they
have found cases of abuse and neglect. But I think what’s important to point out
here is that group homes provide a vital option for people with developmental disabilities
to live in the community. And many of them do thrive living in group
homes. We’ve seen situations where people, once they
enter a group home, really develop skills that they didn’t have before towards independent
living. So, they are a really vital option towards
that. The other thing we know is that people with
developmental disabilities desire to live in the community. And we increasingly hear from them that this
is a choice that they have for themselves. And, in addition, family members want that
for their loved ones with developmental disabilities. They want to see them living in the community
as well. So, again, it’s a very important option that
we have for individuals with developmental disabilities. And one other thing that I would like to point
out is that we have research that demonstrates the value of community-based options for individuals
with developmental disabilities. Research has shown that people have better
quality of life outcomes in the areas of health, their independence, their overall social integration
into the community, as well as their privacy. So, we really need to make sure we have options
such as group homes to support people living in the community, and as a vital strategy
to the overall ways in which we can reduce the incidents of abuse and neglect.>>Anne Rohall: Thank you so much. And I’m getting my timekeeper sign. I know we could talk a lot about this. [laughter] So, I’m actually going to combine the last
two questions — we make sure that we have time for the audience. I’ll address this to Megan, to the Inspector
General’s Office, OCR and ACL. What types of activities are your agency pursuing
in terms of supporting the recommendations? And then a second question for the entire
panel is final thoughts? Briefly though [laughs] so we can move on
to the — to the folks in the audience.>>Megan Tinker: Thank you, Anne.>>Anne Rohall: Thanks.>>Megan Tinker: I would just say as the OIG
we are continuing to meet with our government partners on a regular basis to move these
suggestions forward, both in working with CMS, but also with states as well. And are working hard to get the word out across
the country so that people know that the model practices are there, that they are a toolbox
for states to help them fill in those gaps. And that we believe strongly that these suggestions
and model practices can really improve health outcomes for group home beneficiaries.>>Anne Rohall: Okay, great. Robinsue, in terms of activities your agency’s
doing.>>Robinsue Frohboese: And we too are making
a lot of efforts to ensure that the — that the public stakeholders are aware of these
recommendations. We’ve posted them on our web, have sent them
out over our various listservs, used social media. But we also conducted a nationwide training
of OCR staff in our regional offices because our regional office staff really are our grassroots
linkage to the states and to stakeholders and that will be a very important way of ensuring
that we are getting the word out about the recommendations and the model practices. And we just look forward, certainly, to our
continued collaboration with all of our agency partners and, once again, do thank the Office
of the Inspector General for bringing these important issues to our attention and fostering
the collaboration.>>Anne Rohall: Great. Tim and Jennifer, unless you have anything
that we haven’t addressed I think we’ll go — any final thoughts that we haven’t talked
about before we go to questions? Look good?>>Jennifer Johnson: Well, I –>>Anne Rohall: Okay.>>Jennifer Johnson: — we also just want
to thank OIG –>>Anne Rohall: Okay.>>Jennifer Johnson: — for its leadership
on this issue. And for having the vision to bring the different
partners to the table. As I said earlier, our grantees live this
work on a daily basis. And it’s been great to have a partner at the
federal level, multiple partners at the federal level, to work with us on this very important
issue. So, again, thank you.>>Anne Rohall: Absolutely. Okay, we’re going to open up to questions
now. There are two people with microphones in the
audience. Three?>>Male Speaker: Yeah.>>Anne Rohall: Oh, we have a question. I’d just like you to please identify yourself
and the organization that you’re affiliated with, please.>>Female Speaker: Hi, good afternoon. I’m Dana [spelled phonetically] with the American
Healthcare Association.>>Anne Rohall: Hi.>>Female Speaker: I was wondering what additional
six states you’re taking a look at right now as you’re furthering your investigations.>>Megan Tinker: We can’t –>>Anne Rohall: Let me just — I’ll just repeat
the question.>>Anne Rohall: [laughs] sorry. So, the question was what additional six states
are we looking at?>>Megan Tinker: Thank you for the question. At this point in time that plan — that’s
part of our work plan and we’re not able to identify the particular states.>>Alison Barkoff: Hi, good afternoon. My name’s Alison Barkoff and I’m with the
Center for Public Representation. And I work with a number of coalitions of
people in this room who are focused on community-based services, including CCD’s Long-term Services
and Supports Task Force and the HCBS advocacy coalition where we are — we’re very focused
on this. I had a couple questions, or responses. We were really pleased in looking at the report
and the response from CMS that there’s going to be additional information on best practices
and we’re really pleased ACL’s part of that conversation. I think the one request we have as stakeholders
is we, of course, understand you’re working with states. But we think the perspective of stakeholders
of people receiving services and family members and providers to a part of both of these coalitions
is a really important piece to talk about and influence the guidance. The guidance was very focused on formal supports. But as Jennifer mentioned we know that there
are important practices around integration like people having people who aren’t paid
to be in their life to be — that are important protections states should think about. And then this is also more to CMS and ACL. We appreciate the engagement you’ve had with
stakeholders around the HCBS settings rule. It’s come up a couple of times and it’s something
the disability community feels very engaged and strong about. And we’d like to work with you on how your
implementation at the state level of state plans could incorporate in some of these strategies. And if you have any comments on that we’d
welcome that and to have a conversation with you about that. Thank you.>>Anne Rohall: Thank you. And the acronym used CCD is the Consortium
for Citizens with Disabilities. Most people know that but there may be some
who don’t.>>Jennifer Johnson: Could I just offer one
response to that? So, thank you for your comments. We appreciate those. One thing I didn’t get a chance to talk about
is last fall we funded three grants that we call Living Well Grants. And they are designed to develop a comprehensive
system in states that incorporate both a community monitoring element, but also a capacity building
element to get at some of those things that you identified in terms of those informal
supports that are available, but also those formal supports that are available in the
community to support individuals with developmental disabilities. And just yesterday we had a call with our
three grantees and the OIG workgroup to talk about the work that these grantees are doing. But we also see this as an opportunity as
a way to connect to states. But then also very much connect to the local
level and the reality of what happens in a person’s day to day life.>>Anne Rohall: Okay, in the back.>>Elizabeth Priaulx: Yes, hi. This is Elizabeth Priaulx from the National
Disability Rights Network. We’re the membership association for the P&A’s. And I appreciate the discussion of the P&A’s. I was really pleased that in part one of the
reasons that their report was requested was from a P&A report in Connecticut that found
abuse and neglect. And so, in that way that you’re — the DD
agencies are working to try to uncover abuse and neglect. I want to echo what Alison Barkoff just said
about the HCBS rule that now there are all of these rules and requirements and states
are developing plans. And we haven’t seen much in the way of guidance
around monitoring in the long-term. And I’m very afraid that we’ll be coming back
in 20 years, no five, sorry and saying, you know, they were required to — part of the
rule was person centered planning, ensuring no restraint and seclusion — and all sorts
of things that are similar to what these recommendations are that will make sure that, in part, go
towards quality of the community. Yet just like you reported that states were
required to send in incident reporting they weren’t. So, this seems like an opportunity for CMS
to ensure that there really are programs in place at the federal level by reviewing what
the states are requiring at the state level to do monitoring and enforcement. And what resources will CMS be putting towards
that related to the HCBS rule?>>Tim Hill: So, thank you for the question
and for the prior question as well. I think it’s — for me it’s important as we
talk about this, you know, we’ve — we have talked and the administrator, in fact, just
talked a lot recently about state flexibility and being able to give states more opportunity
to experiment in their programs. And sometimes in that conversation what is
lost is like the second phrase that she says, which is she’s also as interested as when
we give flexibility and when we give opportunities to states to experiment that we are holding
them accountable, right? And so, we are, on any number of fronts, but
in particular with respect to the HCBS rules as we begin having conversations with states
and with the advocacy community about how we organize ourselves and think about enforcement
and compliance. We — it’s causing us to think about do we
have the right infrastructure in place to really hold states accountable. This has been identified by the IG. We have requirements in some cases, in many
cases, the states are not following the requirements. Have we set ourselves up in the right way
to be sure that states understand what those are and that we can, on an ongoing basis,
oversee those? So that is something that we’re actively engaged
in. We’ve talked about the rule changes. We’ve not talked as much about our internal
thinking about how it is we’re going to organize ourselves and address those issues. And so, I would say, and I wanted to say to
the — to the prior questioner that it is important for us that you continue the advocacy
that you do. It’s, you know, we talk to states we talk
to our partners. It is as important that we hear from you about
what’s working, what’s not working, where we should be going, where we should not be
going. It’s hard to understate how important it is
to hear from the community, in addition to the other folks that we hear from on these
important issues. So, I thank you for your advocacy and for
the question. And we’ll continue to talk to you and sort
of work about how it is we’re going to move forward on implementing the regulations — the
recommendations, excuse me.>>Bonnie Brooks: Good morning. I’m Bonnie Brooks and I’m from Maine. And I’m very, very grateful to be here today. I’ve read every word of the three reports,
as well as the January report. I’m here with colleagues from ANCOR. And we take these reports very, very seriously. I’ve been committed personally to people with
disabilities since I started teaching school in Watts in 1965. And so, you can see that I’m — I’ve been
involved for a very, very long time. We’re very concerned, again, about these reports
and we want to be able to be a part of the solution that everyone is seeking for a better
life and better safety quality assurance for the people we support. So, we’re hoping to have ongoing opportunity
for recommendations and communication with all four of the entities sitting before us
now because we consider ourselves as collaborators too. Thank you.>>Anne Rohall: I have to give it to my buddy,
Kim, in the audience. That was the last question. But I — she and I were in the trenches in
2005, taking down the road. So –>>Kim Musheno: Thank you.>>Anne Rohall: Sure, this is the last question
though.>>Kim Musheno: Kim Musheno from the Autism
Society and, of course, I’ve also worked on a number of other places with the DD councils
and the university centers, and I’m the current chair of the Consortium for Citizens with
Disabilities. So, I just want to say thank you first for
doing this report and these important investigations and for all working together on this really
important issue. Again, also I’d like to thank you for saying
that group homes are not the problem because that’s fairly important to say. We all know that these kind of incidences
of abuse and neglect can happen in the family home, it can happen in a group home, it can
happen in a nursing home. I also really appreciated when you mentioned
that we really need adequate resources and supports. And you mentioned it, but can you talk a little
bit more about resources? Because really, we do have a — an — a crisis
in our community in that we do not have capacity in the community and we are — that is going
to be a big part in addressing the issues that you are all looking at right now. If there’s not — we don’t have adequate housing,
we don’t have adequate resources to train providers and attract providers and direct
support professionals are not getting paid well enough. When you don’t have direct support professionals
that are getting adequate training and adequate pay so that they actually stay, you’re going
to have this problem over and over and over again. So, I also think that — I think the HCBS
rule is going — should help in this because of its focus on looking at our systems as
a whole, reforming them, and focusing on person centered planning. So, I’m hopeful that the HCBS rule and what
we’re doing to help to implement that will really help. But I urge you to really look at the issue
of resources and supports in the community.>>Anne Rohall: Thank you, Kim. I just wanted to let everybody know that I
had a conversation with Megan just about this very thing. Like how do we keep the dialogue going with
the disability advocacy community? I know when I was where you guys were it was
so hard to reach somebody in government to have meaningful dialogue. And Megan is incredibly open, as is our inspector
general in the community, to continuing this dialogue. I wanted to provide everybody with my email
address. And I can be the conduit if you have follow
up questions for anybody on the panel. I’m sorry that I have to just spell it out
but it’s — I’m Anne Rohall. And the email address is Anne, A-N-N-E, anne.rohall
— R-O-H-A-L-L — @OIG.HHS.gov. And so, I don’t — Megan if you have any final
thoughts as we conclude.>>Megan Tinker: Just to thank everyone for
taking the time to be here and to be committed to these issues. Obviously, they’re very important to us and
the Office of Inspector General. And we look forward to continuing to work
with our partners, both in government and in the community.>>Anne Rohall: Thank you so much to our panel. And thank you so much to all of you for the
tireless work and keep it up. Thank you so much. [applause]>>Male Speaker: Produced by the U.S. Department
of Health and Human Services at taxpayer expense.