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Community Living Initiative

Summary of Denver and Kansas City
Stakeholder Dialogues/Listening Sessions
Berkeley Policy Associates
May 2011

Introduction

The Supreme Court’s landmark decision in 1999 in the case of Olmstead v. L.C. affirmed that persons with disabilities of all ages have, under the Americans with Disabilities Act, the right to live in the most integrated setting appropriate to their needs. On the 10th anniversary of the Olmstead decision, President Barack Obama designated “The Year of Community Living” to address the ongoing issues that an individual with a disability who wishes to live in the community instead of an institution may face. In response to the President’s proclamation, U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius established the Community Living Initiative (CLI) to identify and promote ways to improve access to housing, community supports, and independent living arrangements for individuals with disabilities and older adults. Secretary Sebelius asked the Office on Disability (OD) to work with other offices within HHS and coordinate efforts across Federal agencies to implement the initiative and align Federal-level home and community based services (HCBS) with each other.

In 2010, HHS held Stakeholder Dialogues/Listening Sessions for the CLI with state and local officials, consumers, service providers, advocates, and other critical stakeholders. The purpose of these one-day sessions was to: 1) help policymakers and program administrators learn more about the effectiveness of state- and local-level programs and services and what challenges related to community living still remained; and 2) suggest ways for Federal, state, and local authorities to reinforce successful efforts and create the relationships and infrastructure needed in order to best serve people with disabilities and seniors in the environment in which they choose to live. Four HHS sessions were held in locations across the country: San Diego, California; Raleigh, North Carolina; Fairfax County, Virginia; and Boston, Massachusetts.

HHS decided to hold two additional Stakeholder Dialogues/Listening Sessions in 2011, in Denver and Kansas City. The goals for these one-day sessions were to: 1) inform relevant stakeholders of the accomplishments of the CLI workgroups in improving access to, and quality of, home and community based services for persons with disabilities and seniors; 2) report on HHS’ ongoing work to implement long-term care services and supports (LTSS) provisions under the Affordable Care Act (ACA); 3) obtain feedback from local and state stakeholders on their successful programs for community living, their current challenges, and potential areas for partnership and strengthened collaboration; and 4) provide ideas for ways that Federal authorities could best support community living efforts at the state and local level.

HHS organized the 2011 Stakeholder Dialogues, with the assistance of the HHS Regional Offices in Denver and Kansas City. The Dialogues were comprised of four sessions: two in the morning, and two in the afternoon. The morning sessions focused on the enhanced partnership between the Administration on Aging (AoA) and disability organizations in the Aging and Disability Resource Centers (ADRC) program, and on the current collaboration between HHS and the U.S Department of Housing and Urban Development (HUD). The afternoon sessions focused on key provisions in the ACA, including Section 2402(a), which requires the HHS Secretary to oversee and assess home and community based services, and on incentives in the ACA for states to enhance long-term care services and supports.

All four sessions involved presentations and panel discussions by Federal representatives and state and local partners regarding current efforts – and future opportunities – to support and promote community living for individuals with disabilities and older adults. In addition to the panelists and presenters on the agenda, the HHS Regional Director in each of the two regions (Denver and Kansas City) made brief welcoming remarks.

Session 1: ADRCs – Enhancing the Participation of Disability Organizations

Session 1 of the Stakeholder Dialogue focused on highlighting the work that has been done to date at the national, state, and local levels to bring the aging and disability service systems closer together through the Aging and Disability Resource Centers (ADRCs). This session also addressed ways to enhance the participation of disability organizations in the ADRCs. An important goal of the session was for the Federal representatives to learn from participants what can be done on the national level to create and develop partnerships across two service delivery systems that sometimes seem to be working at crosspurposes. Yet the systems have much in common in terms of the larger effort to promote and support community living for people with disabilities and seniors.

In both Denver and Kansas City, representatives of Federal, state, and local government agencies presented information on the ADRCs in general and on specific programs and partnerships they had developed. A panel of Federal partners from the Administration on Aging (AoA) in HHS and the Rehabilitative Services Administration (RSA) in the U.S. Department of Education spoke about a “National Vision for Enhancing Coordination and Integration of Access to Home and Community Based Services for People with Disabilities.” State partners from the state aging, human services, and Medicaid agencies then discussed “State Collaborations for Building the Model ADRC.” Local ADRC partners concluded the session with “Making the Vision and Approach Work.” Participants in the Stakeholder Dialogues and the panelists then discussed challenges and opportunities related to the ADRCs and strategies for creating successful ADRC partnerships.

Selected Information from the Presentations

  • A partnership between AoA and the Centers for Medicare and Medicaid Services (CMS) established the ADRCs in 2003. To date, there are 353 sites operating in about 54 state and territory ADRC programs, covering 53 percent of the country’s population. Although some state-level programs are still in an early stage of ADRC planning and implementation, about half are now fully statewide.
  • The purpose of the ADRCs is to integrate the existing aging and disability service systems within a “one-stop shop” that provides comprehensive and reliable information about long-term supports and services for individuals with disabilities and the elderly. The ADRCs also assist individuals in assessing their various options, and connect people to a wide range of services and supports.
  • To be successful, agencies must plan and implement ADRCs in a collaborative manner that involves older persons and persons with disabilities, as well as the organizations and groups that represent them. The partners in this collaboration typically include the relevant state agencies, the Area Agencies on Aging (AAAs), and the Centers for Independent Living (CILs).
  • At the Stakeholder Dialogues presenters from RSA and others discussed the essential role that the CILs, which provide services that support people with disabilities in independent living in their homes and communities, play in the ADRC model. Of the 353 ADRC sites, CILS operate or co-operate about 73 sites (21 percent).
  • In 2005 the HHS Centers for Medicare and Medicaid Services (CMS) established the Money Follows the Person (MFP) program with the goal of assisting states to move from an institutional approach to providing Long Term Care (LTC) services and supports to a community-based system. Forty-three states and DC have received MFP grants. A primary goal of Money Follows the Person is to help individuals transition out of nursing homes and into the community. A major barrier to nursing home transition – and diversion – is a lack of affordable, accessible community housing options for individuals with disabilities/chronic conditions who have very low incomes.

Stakeholder Comments/Questions

Below are participant comments from both Stakeholder Dialogues in italics. Where a specific question was directed to the panelists, or additional information was requested, the response from the panelist, in regular type, follows the question or request.

Status of ADRCs in the States

“[Our ADRC site is] the focal point for about 12 different services within the community. That kind of a model really helps because it does three things: Number one, it's one stop access – the person only has to go to one location to access the different services. It also helps us to coordinate those services better. And most importantly from the standpoint of our elected officials, less money goes into administrative costs and more into direct services.” (Denver)

“We provide homebound meals, transportation, etc. We often get calls from individuals that are maybe 58, 59 years old. They oftentimes are disabled. They may be veterans. But we can't provide them with home delivered meals because they don't meet the age requirement. Do you ever see the system evolving to the point where you are funding things based on functional level as opposed to age or anything else?” (Denver)
“Our conversations have begun to evolve with regard to aging with a disability [and] pulling those resources together, [identifying] options. . . . How do we access other systems and supports to make sure that lifespan is accounted for and that the individual with the disability or older adult, and their family and their family caregivers, are able to see that system as seamlessly as possible? [We should] work with the state and local agencies to see the flexibilities available there. [For example,] AoA has reached out to the Veterans Administration and they're running aprogram of veterans-directed home and community based services through the aging network in places.”

“Can it be done with discretionary funds? We had 5 percent of the money from AoA that could be used to serve those individuals that don't quite meet that age requirement, some sort of discretionary funding that gives us flexibility for those people in that period.” (Denver)
“If you are anonprofit and raise 15–20 percent of your funds from unrestricted sources, those are what you bring in to do those outlier things which are not permissible under some of the mandates but meet the community's needs. When you are in that situation and have those dual funding sources, you have to separate them, track them, account for them and make it work. . . . The idea about thinking more broadly about what type of discretion local entities can have around administering some of these programs is agood one, and something we can take back with us to Washington. The whole idea is participant-direction, based on cash and counseling models.”

“I was wondering how you are working with Veterans Affairs and do you have ideas for the VA on how we can work together to serve that very important population?” (Denver)
AoA has a great partnership with the Department of Veterans Affairs. The issue is giving veterans of all ages more flexibility and empowering veterans to make decisions on their own. We also began engaging their central office in the need for respite care. Certainly as the caregiver bill begins to move through, I think we can build on some of our networks [and] build upon our combined systems. . . I know that the departments are very different, the cultural differences between us are different, [and so] we have to think very broadly if we're going to work out some of these issues.”

“Our HUD program serves a large number of seniors. We have quite a number who would like to stay in their homes and lack transportation. So I would like to know what, if any, types of programs you have that would address taking people to doctor's appointments, getting groceries, things like that so they can stay in their homes.” (KC)
“The ADRC does not provide services per se. The ADRC identifies service providers and leads people to those. The AAAs have programs, both private-pay and funded to transport folks, but there are ten AAAs in this state and they all operate differently. We all have different client groups. Some are metro, some are rural. Knowing what resources are out there, whether it’s through a CIL, AAA, Faith in Action, volunteer network, that's what the ADRC does. We identify the resource, get it in the database with contact information, so consumers, individuals, [and] professionals can get those services.”

“[I’m] with the Developmental Disabilities Council. I was really delighted to hear you were talking about or thinking about or planning to provide some education for guardians. One of our main concerns is that people often are in institutions or desiring community living opportunities but their guardians have determined that they're best served in an institutional setting. [The] planning team says they're able to live in the community, and they desire to live in the community, but the system is not able to really reach out to them because their guardian says they're not ready to move to the community. Have you thought about, beyond educating the guardians, how you might help make that next step or challenge that system, so that guardians are not saying it's easier to keep them in an institution, so that's what we'll do?” (KC)

“Currently, whenever we're developing the ADRC, we're going to be working with stakeholders. . . . And as we develop our stakeholder group, we're kind of revamping the Money Follows the Person. We decided in the last year to make it a bigger effort. We're doing a lot of changes in the program. Part of those changes are to address exactly those kinds of things and we want stakeholder input how that might best be done. Hopefully, we can get some consumers that might be able to help us or families that might be able to help us on what is the best way to approach some of those [challenges].”

Bringing the Disability Community into the Partnership

“[The ADRC] started as an aging-only service. If there isn't an affirmative, active attempt to include people with disabilities, it doesn't happen. The needs are different. The culture is different. The communication is different. . . . Can whoever is funding this mandate that there is some bridging? That might mean spreading the funds, and making sure the disability organizations that are being brought in get funding for their time. The people at the main organization, some are [being paid]. Maybe that needs to be contracted out to the disability groups so they can have the right kind of expertise and right people at the table.” (Denver)

“There is a need to bring everyone to the table, even --and it will be uncomfortable because at this point a lot of people with disabilities are angry. So you have to be willing and able to work through that and hear what people are saying and not get shut down or defensive when they bring up something or even when they want to bring cultural issues to the table and have that dealt with as part of the ADRC or ARCH (Adult Resources for Care and Help, Colorado’s ADRC).” (Denver)

“What if you are in astate that is not doing [anything]? You look on the Web, the ADRC is very loosely mentioned. They really don't have any real distinct contact person. Money Follows the Person is saying they're partnering with the ADRC, but the information is nonexistent.” (KC)

“That's exactly why we're doing this session. We've noted in describing our partnership with AoA that there is often a real lack of participation by the disability community. That's why this partnership was formed. We are working to strengthen those partnerships where they aren't as strong as they could be.”

Consumer-Directed Programs/Services

“If ADRCs are going to be effective, they need to have amandate for independent, cross-disability representation at the decision-making level. . . . Could there be some sort of mandate about involvement at the board of director level at whatever organizations are doing [the ADRC]? A lot of people in the disability community will only trust organizations at [the board of director level], since independent living centers have to have amajority of people with disabilities on the board.” (Denver)

“Perhaps the department should consider the consumers as the advisors. They're the ones with the life experiences.” (KC)

“We can do this slowly and painfully over many years or quickly and get the pain over with by putting the consumers directly onto boards of directors and get away from advisory boards which are really tokenism. You can accept the advice of the advisory board or not, but I think we need to put our consumers where our board members are because that's where the decision and the governance is being made and that's where the lived life experience needs to be. I, as a consumer, don't feel comfortable with a professional being my lived life experience voice.” (KC)

Medicaid Waiting Lists

How are [Medicaid] wait lists being addressed? We have several people on wait lists that haven't received resources, even though they've been through the application process, are where they need to be, they're now on the wait list waiting for services. [Is it] possible for the individuals who are on the wait list to look at the single point of entry to see if there is a different resource that would be available to them rather than sitting on the Medicaid wait list?” (Denver)
“I think that's the broader vision for the No WrongDoor, One Stop Shop, ADRC model. You would be able to go to one place that would talk about the diversity of services, and that would be in addition to what's available through Medicaid. . . . What we have done is partner with [various organizations] to really look at an individual who may be on the Medicaid wait list but may qualify for services under a different set of home and community based services which does not have a wait list. [What] we try to do is coordinate those community based services that are not necessarily Medicaid- or Medicare-driven and really try to get creative with an individual so we can keep them safe, with a high quality of life and as independent as possible. And provide support to their caregivers so that they [consumers] can continue to remain in the community.”

“I think one thing that needs to happen is more dialogue with the state and CMS. There are a number of things we can do right now that would require simply a waiver, not an HCBS waiver, but the waiving of some regulation [so] we could get people off the waiting list and into services with the same money. [When] we bring something up as advocates, if we get a response from the state, it's generally, well, CMS says we can't. [It would be good if there would be] some way we could set up dialogues on a regular basis with some timelines for responses.” (Denver)

Mental Health Services

“I didn't hear anybody talk about interfacing with mental health. When we initially applied for the ADRC grant in 2005, we [identified] two target groups that we wanted to serve, people over 60 and people over 18 with a disability, [typically] a physical disability. Recently the Administration on Aging has identified the priority to serve people with mental health issues as well as people with developmental disabilities, so we are working that into our model now. However, it's not as established as our relationship with the physically disabled community, [although] we have some centers served by independent living centers with strong mental health services.” (Denver)

“Could somebody talk a little bit about any initiatives to draw into the community populations that are often invisible or who have disappeared, meaning, people with mental health disabilities, particularly that invisible population of older adults with mental illness disabilities; what kind of initiatives have there been made to reach out and draw them into this inclusion effort?” (KC)

“It's very important that we get to where we need to be around serving folks with mental health issues. The challenges at the Federal level are significant. SAMHSA, the Substance Abuse and Mental Health Services Administration, has always existed out in its own little sphere. We're trying to integrate SAMHSA into a number of things, [especially] our work to integrate the Medicaid program with the needs of persons with mental health and substance abuse issues. I think the reality of this challenge is that it's going to take us a while. The systems and bureaucratic silos have been built. In order for us to cut across them and integrate things is going to take more time. In the area of mental health we have a long road to go, still, but we're not stopping.”

Session 2: HHS-HUD Collaboration

In Session 2 of the Stakeholder Dialogue, federal, state, regional, and local participants in the collaboration between the Department of Housing and Urban Development (HUD) and HHS highlighted what they were doing to improve individuals with disabilities’ access to affordable, accessible housing and to reduce the barriers to community living for individuals transitioning from a nursing home or other institution to the community. Session 2 also included an overview of housing activities under the Centers for Medicare and Medicaid Services’ (CMS) Money Follows the Person (MFP) Demonstration and a state/local panel discussion on HHS–HUD partnerships and opportunities for collaboration.

Selected Information from the Presentations

  • Lack of affordable, accessible housing is repeatedly cited as one of the most significant barriers to implementing the Olmstead decision.
  • In October 2010, HUD awarded 4,300 Housing Choice Vouchers to public housing authorities (PHAs) for use by non-elderly people with disabilities (NED). These vouchers (referred to as Category 1 vouchers) enable non-elderly individuals with disabilities, including those at risk of institutionalization, to access housing in the community that meets their needs.
  • In January 2011, HUD awarded 948 Category 2 vouchers to help non-elderly people with disabilities transition from institutional settings into the community. Category 2 vouchers require PHAs to partner with state-level Medicaid or Health and Human Services agencies responsible for nursing home transition. The Housing Capacity Building Initiative for Community Living Project is a collaboration between HUD and HHS to help develop sustainable partnerships between the PHAs and the state agencies that support individuals with disabilities. In many cases, the PHAs awarded with NED Category 2 vouchers have chosen to partner with CMS in order to leverage Medicaid resources available through the MFP program.

Stakeholder Comments/Questions

Participant comments from both Stakeholder Dialogues are shown below in italics. Where a specific question was directed to the panelists, or additional information was requested, the response from the panelist, in regular type, follows the question or request.

Overall Housing Issues

“We are a statewide Housing Authority, serving primarily persons with disabilities. We have over 4,000 participants in our program. I believe we are the only Housing Authority in the State of Colorado to currently offer a preference to persons exiting institutional settings. That goes back to the old Project Access program in 2001. Great program. I think what HUD needs to do is work with public housing authorities to recognize this population, educate the communities about serving it. I think if we could increase the number of housing authorities recognizing this population is part of their community and setting aside a preference for them, our program would go far.” (Denver)

“I think if local housing authorities would set aside ten vouchers, if every Housing Authority could do that, this would be one more [thing] to enable people to live in the community. I just think if everybody gave just a little bit, we can't fix everybody, we can't house everybody, but I think we could make a dent in getting people out of institutional settings.” (Denver)

“Anytime there is a stakeholder discussion, particularly in developing 811 rules, it is absolutely imperative that someone affirmatively make[s] sure advocates and people with disabilities are at the table, because we have to make sure they're safeguarded” (Denver)

“We need to make sure people's privacy is respected. If someone chooses not to take their medication they should not be evicted. If they behave in a different way that's different. After reasonable accommodations have been made, then there might be reason to do something. But because someone makes a medical choice, that's none of their landlord's business. How many of us tell our landlords what our medical care is? We have to be careful about those civil rights issues.” (Denver)

“One of our challenges we are really concerned about as HUD vouchers are released and as the housing system makes rules and shares funding opportunities with different organizations, is that the housing is truly in the community and is inclusive. . . . It may be very challenging for people. At some point, someone literally may have to say, do I want to be in this program or stay in my house that I'm comfortable in? We need to look long-term in this case. How are you looking at this long-term to help to make sure people are able to really be in the community, not in segregated housing or public housing just for people with disabilities or special needs? (KC)

“[We were able to find housing for an individual with a disability by,] instead of operating the way we always did, working with other organizations in order to get him the kind of housing that he wanted and that he would be successful in. We have a collaborative effort with the Department of Mental Health. Without them the supports wouldn't be there for him. (KC)

“One of the things we're looking at is the concept of universal design. If it's a universal design, it's accessible, accommodates everyone. We're saying we're looking at “8 to 80.” If it's good for little kids and they can get in with a stroller, then you can get in with a wheelchair. That's something I suggest you also talk about in your communities.” (KC)

“Rural housing is a particular challenge. Even though the population seeking transition isn't large, the available housing is quite a bit less. I know there are rural housing programs under USDA and I know HUD. I'm just wondering if there are some rural housing programs that need to be brought into the dialogue with HUD and CMS to talk about how to create more housing opportunities in rural areas.” (KC)
A brief discussion of USDA’s Rural Housing funding and how that might relate to community living followed. For details on the USDA Rural Housing Program, including programs of particular interest to persons with disabilities such as Section 515 Rural Rental Housing and Section 521 Rental Assistance Program, see http://www.rurdev.usda.gov/LP_Subject_HousingAndCommunityAssistance.html

Assisted Living

“I would just like to ask what your opinion is of the future of assistance for an assisted living provider and developer of housing and services. [It sounds like] you are not advocating it as part of the solution to some [of] these issues, [such] as housing. As a developer, I probably would say I would not go develop any more assisted living in the Medicaid program. Looking at the initiatives and things people are wanting, [it sounds like] you are considering assisted living to be institutional.” (Denver)

“Assisted living is clearly an important resource in terms of housing. In fact, we made some special efforts to try to make assisted living in some form available to folks in the MFP program because it was needed. . . . One of the challenges is that ‘assisted living’ isn't a term of science. There is a lot of debate within the advocacy community with what folks want, not one size fits all. There are some real challenges when you have limited resources about where those dollars are going to get spent. How do you have a system that is person-centered rather than provider-centered? What are the extra protections that may need to be in place if the provider of the housing is also the provider of the services such that the individual can't fire their service caregiver without moving? Our goal is to assure that folks have choice and assure there is going to be affordable housing available. I think there is a lot of debate on what the characteristics of home and community based housing are, what the most integrated setting means, and how do we recognize those things so we can support them in terms of where the dollars will flow. There are a lot of folks engaged in trying to understand this issue right now. . . . We hear from the aging community that they value assisted living as an option for services with home and community services. We hear frequently from people in the younger disabled populations that it's the worst thing they've ever heard of. . . . We don't find a lot of consensus around some points so we're continuing that conversation.”

“People leave their homes and go to senior citizen housing, which we have and it's great. But the next step is painful. They go directly to a nursing home in many cases because there is no mid-passage. What we're trying to do is build an assisted living complex, not just housing. We want to bring a doctor, dentist, pharmacist, physical therapist, gift shop, beauty shop, barber shop. And open it up to the surrounding communities because we're so painfully short of help. We don't have a lot of money. It's a nonprofit. The housing board will be the same one that runs this and they're all volunteers. Is there any kind of funding that helps with innovative or pilot projects in the rural areas”? (KC)

“One of the things we're hoping the ADRC will help do is highlight where we have these service deserts. Where we have communities that don't have adequate services. We feel like the ADRC will be a great tool in collecting data on that and that gives us something to advocate with, to present to the legislature. [One program you might look into is] PACE, the Program for All-Inclusive Care. They don't quite reach the vision you have laid out for us, but really are an attentive [program], trying to bring together akind of facility-based, site-based care team so people that are older can get their needs met during the day. That might be acomponent of what you are looking for.”

“Thank you CMS for working now to do a better definition of community living.” (KC)

Nursing Home Transition

“As a houser, I have no idea what the need is out there for people who want to move out of institutions and into a community setting. If I had a better idea of that I might able to create some opportunities. . . . Need is much harder to measure sometimes than demand. There is a big difference [between need and demand,] and failure to recognize that difference is the reason a lot of housing providers go down. How do you help us with that? How do you help us identify in my community, my county, how many people need to move out of institutions? And if I had that type of housing, would there be a market for that?” (Denver)

“The last person to get helped out of a nursing home with a voucher here, that saved Medicaid money and all of a sudden HUD is paying for that. When we talk about Money Follows the Person, there is a disconnect. If you want an idea, it's that the funding that's paying for them to stay in an institution switches over to allow HUD or a housing voucher to put them in the community.” (Denver)

“When you were talking about the vouchers and taking people from institutions, you were saying ‘institutions’ but [then] said ‘nursing homes.’ My question is, can that include other kinds of institutions, particularly jails or state psychiatric facilities?” (Denver)

“MFP deals with institutions under the Medicaid program, which would be nursing facilities, ICFs, MR and psychiatric facilities for children, but not adult institutions for mental illness. It would have to be a place where Medicaid is paying services as an institutional service.”

Fair Housing Issues

“I work in the civil rights portion of HUD. We encounter many [people] wishing to file a fair housing complaint because they feel their housing provider has not provided them access to the program as is necessary. . . . One of the difficulties we have in being at some distance from the actual delivery of the assistance that goes through public housing agencies and other local nonprofits is that we don't know where and how to assist a person that is not connected into the system. While we're talking to them, we know they're in great distress [but it is difficult to try] to direct them to someone who can help them when either they are not connected to the system or they can't articulate that they are. How can we better serve those individuals who [don’t] reach us [until] they're in some kind of a crisis?” (Denver)

“Is there a way that HUD can assist the different organizations in being able to communicate the housing rights of individuals who are seeking to obtain housing outside of an institution? Reasonable accommodations are real avenues for them to secure and keep their housing, [allowing] them an opportunity to sustain their housing at a time it would otherwise be difficult.” (Denver)

Session 3: Oversight and Assessment of Home and
Community Based Services

In Session 3, the Federal representatives at the Stakeholder Dialogue focused on aprovision of the Affordable Care Act (ACA) that covers home and community based (HCBS) services. Section 2402(a) of the ACA requires that the Secretary of HHS promulgate regulations that ensure that home and community based services provided through the Department’s programs for persons with disabilities and older Americans are more uniform across programs and are responsive to the needs and choices of recipients of these services. The regulations also must support recipients in self-directed community living, promoting maximum independence. The Federal representatives requested feedback from participants in the Stakeholder Dialogue who work directly with people who rely on home and community based services. The discussion focused on participants’ views about the concepts of community living, person-centered planning, and self-direction.

Meaning of “Community Living”

“I think one thing that defines community living is that [unlike being in assisted living or a nursing facility,] I don't have to make contracts for basic parts of my existence, like food, transportation, and rent. I mean, I sign a lease, but I don't contract for the rest of my life where I'm going to live. [The] same thing is true for food and transportation and living in the community, going where you want, eating and making those basic decisions. Typically, those aren't contracted decisions.” (Denver)

“Isolation is one of the biggest issues. . . . As people age, they become more and more isolated and have less of a sense of belonging and community participation and feeling that they can contribute. [That is] a huge piece of what people need.” (Denver)

“I would really like to ask before this goes much further: how can we start getting a lot more input from the people that this affects directly, the people that use these services, rely on these services? What can we do to make that happen at the front end?” (Denver)

“I think some people want to have access to their own spirituality stuff, whatever that might be.” (Denver)

“In writing regulations that would be across the board, I think you have to be really careful about the wording and the expectations. Be very careful in writing those regulations to allow for differences. For instance, working with a frail elderly population [you don’t need] anything in there about requiring community participation, education, rehabilitation to work. We're really not going to be building their income [or providing] rehabilitation for that population. . . . Our goal in working with that population is simply to keep them in the home, in the community, and as highly functioning as possible.” (KC)

“It all comes down to whether or not there is going to be a service provider in the home and who is going to pay for that. . . . If there is no money to pay for the services to keep the person in the community, we could define it all day long, it's not going to be there. [The state] will say, you get this number of hours all year long, a certain number of hours each month; it's not enough to keep people in the community.” (KC)

“I think one of the problems is using the word ‘community.’ [W]hen I have to go out and explain it to somebody else, a potential partner, it's their mind-set as to what they define as ‘community.’” (KC)

Parity/Equality Issues

“No one else in the world has to justify every minute of their existence and have things micro-managed by the minute. [Under Medicaid], you can get nonmedical transportation to go to therapeutic swimming, but not out to dinner with a friend. It's capped, you can only get so much, so why should they care where you are going or ask the question? If you need transportation, you get a certain number of rides, manage it.” (Denver)

“[Sometimes] something big happens to an individual who is in home and community based services [like you need to] stay with mom for a month if you have a baby or cancer or whatever. Which normal people do all the time, but we say it’s not okay for people with disabilities. [If you] don't get that waiver service for an entire month, man, you are out, you are back on a wait list. . . . When that critical episode is over, [you may] lose access to all the home and community based services because you had to come and live with mom again for a couple of weeks.” (Denver)

“When I hear discussions around community living, there is a part of me that goes, why is it we only talk about community living when it comes to people with disabilities? People with disabilities want what everybody wants. We want an opportunity to make the choices that work best for us. We don't want barriers to those opportunities that have something to do with our disability. We want to be able to access the same goods, same services, same, you know, go bowling with our friends, the same activities that anybody does. [If] you were going to look for a guiding principle, instead of looking at what does community living mean for people with disabilities, what does it mean for anybody? What do we all want as human beings to be able to do with our lives? We're looking at equality and parity. We're not asking for anything special above and beyond what other people have, kind of take for granted.” (KC)

“We must not forget that the key to all of this is the fact that we're looking for equality of civil rights across the board. And if it violates the civil rights of an individual that doesn't have a disability, then it violates the rights of a person with a disability.” (KC)

Living in “a” community vs. Living in “the” Community

“When you say ‘community living’ to me, I just think it's as if you want people to live in a community. Just like four people, five people living in a community. Why do you say ‘community living?’ I would rather see myself living as you live, have a house, an apartment. When you use the words ‘community living,’ it sounds as if you are talking about people who would be living in a community. Still has that implication of [congregate living].” (KC)

“It's very important that people. . . aren't grouped or congregated in some form based on some definition. Just as with any population, you wouldn't expect all the football players in your community to live in one neighborhood or all people of a particular race or ethnic background to have to live in one neighborhood. We decided that years and years ago, yet we do that often with people with developmental disabilities and we're doing it essentially with people with aging issues as well. . . .[We need] always to revisit what Ed Roberts had in mind when he was thinking about the independent living model. . . . The connotation of “community living” is that you are trying to put these people together so that you can provide services easier, and so forth.” (KC)

Person-Centered Planning

“With regard to person-centered planning for seniors, PACE [Program of All-inclusive Care for the Elderly] programs have it down. I think that's the standard at this point.” (Denver)

“I work for a home-based service, a senior resource center,[which is a] counterpart of the PACE program. We developed a navigation coordination model several years ago with a person-centered approach in the way that we interact with our partners in the community. Even though we're a multi-service provider, [we’re not] very comprehensive, so we utilize community services already present, and build partnerships and networking to enable the person to stay in the community.” (Denver)

“[T]here are lots of assisted living facilities out there that do not necessarily use a very patient-centered approach to care planning. We teach an assisted living owner/operator class, and I can't tell you how many people that come through that class haven't a clue how to write a patient-care-centered plan.” (Denver)

“Person-centered planning could potentially take longer with the client to work through setting their goals and getting their input into the planning process. Does our case management system within Medicaid have the capacity to take this on? Particularly when we talk about case loads that could be anywhere from 70 to 100 clients.” (Denver)

“Just to weigh in for assisted living and independent housing, we're a HUD facility, and have service coordinators ,The people in our assisted living programs have person-centered care through our coordinators and it works well.” (Denver)

“We utilize volunteers; I think that's part of the care plan. We have transportation at our facilities. So those are taken into consideration as we put together that care plan for that individual. Adding to that, we collaborate with case management services, mental health providers, family, etc. We do discharge a lot of people [whose] goal is to return to their own apartment and the community.” (Denver)

“I think it is really important not to underestimate what a paradigm shift this really is, whether you call it client-centered, person-centered, patient-centered. . . . When I went through family therapy training, we studied how systems work and a number of studies that showed they were responding to the needs of the agencies, [not the person]. The client was on the bottom of the list. . . . I think we need to look at what incentives organizations are responding to if we're really going to have patient or client-centered work.” (Denver)

“I don't see [anything] here that is any different than what should happen already under what we call in the DD system an IP meeting . . . . By changing the name, we imply there are differences. The problem has really always been in the implementation, not in the regs or what you write down. It's in the attitude or the weight of the team . . . . It's a little difficult to mandate but I think that's where we need to look at in terms of what hasn't worked before.” (Denver)

“I think doing this takes a lot of time, especially for people who have processing or cognitive issues who need to think this through for a while, have time to process and ask questions and explore. . . . If you have been working in a sheltered workshop for the last six years and that's all you know and somebody came to you and said, well, would you really like to have a job in the community? You might say, no, I know this and I'm going to stay here. But if you had an opportunity to do some trials and experience that in other places, you might [be] able to make a better decision about what you want.” (Denver)

“One thing we see in the person-centered plan is a lot of time for individuals who have guardians. If there is some way to have inclusion by the individual even if they have a guardian, it would probably be helpful.” (KC)

Considerations for Regulations

“When we talk about person-centered case management, think one thing you have to understand, to be truly person-centered it can't be too regulated. It happens in a relationship between two people, the case manager and the person. Some people want a lot of guidance. Some want very little. They want information and education. So the regulations have to be written in such a way that allows for flexibility.” (Denver)

“Are you talking about having someone from housing to be at the person-centered meeting? I don't see that happening, there are few housing staff who would have the capacity to do that. What we do with housing for the population we're working with in Money Follows the Person is to . . . have that partnership [and] know how we can access what is available and work with them. But I would be leery of putting in a regulation that requires them to be at that meeting because I don't see that happening.” (KC)

“In doing regulations, what sometimes happens at the field level, those regulations become exclusionary or a requirement. If it's in a list you either have to do it or you are in trouble. You know what I'm saying? By listing these things, sometimes at the field level that becomes interpreted in a different way . . . or becomes a recoupment issue because it said this is on the list and you didn't do it or you did something that's not on the list, and you are billed for it.” (KC)

Self-Direction

“It’s the choice of direct care workers including family and friends. I think we should bold that.” (KC)

“Self-direction is the best for [the mental health population] because that population is the one that's always being beaten up on by agencies because they don't like the way they act. If they can self-direct and have control over it that makes more sense. People with mental illness almost more than anyone else need to have control over who comes in their house who touches their stuff and who they have to deal with. This is the population that needs it more than anyone.” (Denver)

“I think one of the things that we're kind of missing in this is the fact that people with disabilities and families don't run in a linear fashion. They utilize services across systems. So when you are talking about self-direction or person-centered planning [for one system] you have to remember that [all] the other systems want to know as well what you are doing. It's more about blending funding versus braiding, thinking you can follow it to the root. Blending is like a smoothie. You can't recognize the strawberry after it's in the smoothie.” (Denver)

“When we talk about home and community-based services, and all the programs we're working on throughout the Federal system, and integrating everything we're doing, we should also keep in mind minority populations and how language barriers or cultural barriers could exist.” (Denver)

“Who is going to pay for it? Every one of us that is funded – what are we doing with the money? So, that's going to be a big factor in getting the quote, general community support. You are doing what with my tax dollars? For who?” (KC)

Dignity of Risk

“There is this element of paternalism that is present that we have to [acknowledge], on the background check, we get to decide who you can have as an attendant. And I understand about guardians not being paid caregivers and spouses and that's fine. But there have been attempts to say, well, if you got busted for having a pot plant 15 years ago, you can't take care of your mother now. That's the kind of thing there is some kind of assumption that because you have a disability, it doesn't matter how smart you are, whether you have a good job or whatever, you are not able to decide for yourself who is safe to be around you. So the state has to do it. A lot of it is covering themselves. What, you are paying a former drug felon to take care of his mother? Oh, my God, this is what self-directed care means, choice of caregiver, including family and friends. That means a family member can direct the care for someone who is unable to direct their own care which some states have that, some states don't. I would just add a bullet point there that says dignity of risk.” (KC)

“I work with people with disabilities but also older adults. And I want somebody to tell me where the ripe old age is where somebody tells me I can't walk down into the basement or live alone. What is that magic age? There needs to be a dignity of risk. People need to be allowed to make the choices to take risks.” (KC)

Technology Issues

“There are a lot of nice new techniques that special educators are using for people who have executive functioning problems to use to do their own planning through scaffolding and trees. They're more like accommodations that can be put in place. One of the things I haven't heard talked about at all today is the use of technology. If we can get people the right tools, they're much more able to self-direct or manage or whatever.” (Denver)

“It's not just getting the device, it's also the training and usage. Medicaid will provide the communication device but won't fund the warranty that not only keeps it working but also ships it back and forth to the company or gets a loaner. So if you do get dependent and have to ship it back, you don’t end up losing your voice for a week at a time.” (Denver)

“We also have a proper assessment of technology prior to the individual trying to incorporate that in their life. I see technology that's wasted because the individual thinks they can use it or they think it's a nice fit. But once it's in their hands, it's not functional. So I think it's important to build in a safety net as far as the assessment process for technology as well. ” (Denver)

Session 4: Key HCBS Provisions of the Affordable Care Act

In the final session of the day, a representative from HHS’ Centers for Medicare and Medicaid Services (CMS) presented information on some of the unique incentives the Affordable Care Act (ACA) offers to states for providing long-term services and supports under Medicaid for individuals who have chronic and disabling conditions. Participants in the Stakeholder Dialogues asked the following questions of the CMS panelist. Responses of the panelist follow each question.

“What can we do about enforcement of existing rules? Some of us are very frustrated, major violations are going on. We keep bringing them up time and time again but no action. . . . Is there anything we can do other than pure litigation all the time where we can get enforcement? Just as an example, something going on [here] right now is when someone transitions out of a nursing home, they're forced to reapply for Medicaid – and go months without it. Since it takes months to do the application at the county site – even though there was no change in their functional status, disability, finances. It’s only because they're moving from a nursing home to the community.” (Denver)
The CMS representative agreed to look into this.

“Over a certain threshold, states would get the enhanced FMAP [the Federal Medical Assistance Percentage, the Federal match for each dollar a state spends on Medicaid]. I talked with other states when I was at a conference a few months ago. There is some concern among states that when you look at the aggregate spending for HCBS, they'll be above the 50 percent. But if you look at specific target populations within the long term care population, the spending for HCBS will fall under 50 percent. I was curious how you were going to establish those thresholds and whether you would be considering target populations.”

“[Another] question is about conflict-free case management. Is there guidance that will come out about that? We had a conflict of interest task force last year and came up with some recommendations. [So] I was curious about when that guidance and more information might come out.” (Denver)

CMS is in the process of developing the guidance on these issues through a State Medicaid [Directors] Letter (as opposed to regulations).

“I'm on the housing side so I want to make sure I understand. With health homes, [with] all that bundling of services, that's outside of the cost of housing those persons in the community, right? . . . I'm trying to figure out how HUD in this collaboration could possibly help you meet the goals of having that many people be in the community with all of their services. I think it's a huge challenge for us.” (Denver)

“It's not [always] about housing. Not everybody who is served by Medicaid and long term care needs subsidized housing. A lot of folks live in their own homes, with their families, or people have their own apartments. There’s sort of two groups of folks who are looking to Medicaid for long term services and supports: folks that are already in the community that are trying to stay there, and folks that for whatever reason have already made the move to an institutional setting and may be needing and wanting to come back into the community. A lot of the focus right now has been around those folks in an institution and trying to transition back. Many have lost whatever housing arrangements they've had all their lives. [T]here are a lot of folks [in] institutional settings [who], as they come back to the community, need help finding the housing.”

“[There is an] impact on the waiting list. For example 40–50 percent or more of the waiting list in [one local program] program, all of those people are people with disabilities. Do you think there is enough dialogue at the Congressional level or Assistant Secretary level to say, this looks like a breath of fresh air. This is wonderful, but we didn't contemplate the physical structure which these families would receive these services?” (Denver)

“The connection between housing and these community-based services and supports is [well-recognized at that level].”

“My question was around the CFCO, Community First Choice Option. I think you are right – in many states, in this environment, they'll have ahard time convincing folks to come to the table and design aroadmap. The 6 percent is very attractive. There have been a number of state legislators that are interested in that. Their question is, is it time limited? Is there a cap? [Unfortunately,] a lot of the rhetoric in the states now is: We already know the Federal budget is a trillion dollars overspent, why would we put up state dollars to see the Feds go under even more? I don't know if you have heard that, but that's the pushback we're getting. We're not going to give 40 cents to get 60 cents back. [W]hen you are offering 6 percent they still don't want to take it.” (KC)

Each provision, of course, has its own time limit. For CFC, it's not time-limited. I think the reality is if you manage your Medicaid long term care system well, you can do it cost effectively and may be able to reduce your spending in institutional settings with a modest increase on the community based side.

“The disability and aging community has fought for decades to have the [institutional bias to be] recognized at the Federal level. We still have work to do, but to hear the partnership is happening at the Federal level, it will trickle down to the states and the local level. The disability community has fought for this with blood, sweat, and tears. We don't have any lobbying money and have tried to fight off the nursing home lobby for decades. Now that you all get it, we so much appreciate your hard work in trying to let it trickle down. I appreciate the work you are doing up there and we're going to need your help to keep pushing it.” (KC)

“I was really glad to hear you say that there has been some analysis [because] one of our questions that we keep saying is, why are we having to try to figure this out? Why isn’t there some kind of cost analysis? Shouldn't there have been something to help the common people in the state understand about the true cost? That was a huge issue when Money Follows the Person first came to the state. It didn't look good. But fortunately, the state jumped in and we have excellent outcomes from that. It's kind of hard as an advocate to know [what to say when] all we're hearing from the state is that it's cost prohibitive. It would be good having some assistance in getting the right information. [Also,] what are the chances of making home and community-based services more of an entitlement program?” (KC)

“The Community First Choice option is a good example of what happened with the ACA. People were pushing for the inclusion of the broader Community First Choice Act in the health reform legislation, [which] resulted in kind of settling for a state option which was deemed affordable by the Congress. [However,] I think the charts show that, even when you hold down the spending on the nursing home side, the reality is you are increasing spending on the community-based side. . . Some people may want to limit the amount of money that's spent on these services. But then we look at the demographics that seem fairly unrealistic in light of the number of people that are aging and their financial means. So it's, I think, prudent for states to really manage their long term care dollars better than before, and pursue the systems reforms that CMS offers up to states before the demand for institutional services overwhelms their system. . . . [In addition,] we've been having lots of internal discussion about how we can use the Section 1115 waiver authority, to work with some states around how to figure out some programmatic option, that would get to the same outcome as an entitlement.”

“[The PowerPoint] says CMS guidance and application is targeted for mid-2011. The program is supposed to start October 1, 2011. So there is not going to be a very long turn around for states to respond.” (KC)

“Just because claiming can begin in October 1, 2011 doesn't mean there will be a cutoff date for states to apply. We've been looking at options so that we would make the provision available. And as states are ready to come forward, we would be willing and able to engage in those discussions. The increased funding lasts for four years.”

“For Section 10202 [the Balancing Incentive Program, enhanced FMAP for states that undertake structural reforms to increase nursing home diversions and access to HCBS], if somebody is close to the 50 percent, what happens if they go above 50 percent within the four years? Does it matter?” (KC)

“The goal is you have to get above the 50 percent. Given the resources that I think are available under that provision, we're more than prepared to accept states that come along.”

“My limited understanding of the lack of appeal of some of those [provisions is that they] limit the income options for states like ours that actually serve people at higher incomes than some other states. [What about] the state's flexibility in setting what levels of income they're serving in the Community Choice First program?” (KC)

“For Community Choice First [sic Community First Choice], you are still at the challenge of the 150 percent of FPL but it isn't tied to the institutional level of care. And at least we are talking about some of the provisions. [For example], the Section 1115 option that we're thinking about, that I think would provide a great deal more flexibility around the Federal poverty level because you could think about them as expansion groups which could be offsets on other parts of your program.”