August 29, 2016, Washington, DC, Remarks as prepared
Good afternoon, and thank you for inviting me to join you today.
It’s such a privilege to represent the Administration for Community Living on this stage. Although I have to tell you—it’s a bit daunting to try to follow Kathy Greenlee up here. I had the honor of being part of Kathy’s team when she, Sharon Lewis, and Henry Claypool conceived and established ACL, and it’s a tremendous honor to help carry their legacy forward into the next administration.
But I can assure you, Kathy left some big shoes to fill!
All of us at the Administration for Community Living look forward to the HCBS conference every year. Of course, it’s a great opportunity for us to share news about what is happening at the federal level to help inform your work.
But even more important, it gives us an invaluable opportunity to hear from you and learn from your experiences in your communities. Your innovations and promising practices help to inform our planning, and the work we do here in D.C, and with network partners across the country.
It’s also really helpful to hear about challenges you are facing and consider where we can assist. The conference gives us an opportunity to work together, and to bring together people who may not have previously seen themselves as partners.
So again, I thank for you for the opportunity to talk with you today.
As a nation, we are currently experiencing a time of transition.
It is a time of demographic transitions.
The country is becoming more diverse, by every measure. And, of course, our population is getting older. You all know the numbers—ten thousand Baby Boomers are turning 65 every day, and by the year 2020, more than 55 million people will be over the age of 65. And there’s another very important trend for our work. Thanks to improvements in health care, we’re now also seeing many more people with disabilities reaching old age.
We also are on the verge of political transition.
We have the presidential election this fall, and the administration transition early next year. Many of you are also anticipating transitions in state government.
And as we’ve already talked about, we’ve had just a little bit of transition recently at ACL.
Transitions can be challenging, no question. But it’s important to remember that we have gotten through transitions before, and we are strong enough to forge ahead.
In the last few years at ACL, I have seen all that we can do and how much we can achieve together. With our strong record of success, I know that we can come through these many transitions better than ever.
We all have seen what ACL and the aging and disability networks can accomplish when we work together. We’ve brought together resources from a diverse group of organizations and communities, collaborated on innovative approaches, and become more effective advocates for our shared vision of community living.
So although transition can be tough, I am not worried. No matter what, our work to
I think I saw a couple of eyes roll when you heard me say “transform.” But while the word may be overused, we truly are in a time of transformation. And everyone in this room is helping to lead it.
We are seeing transformation in our health care systems.
The Affordable Care Act has brought insurance to millions of people who had been uninsured, including many people with disabilities who had been excluded in the past due to pre-existing conditions.
We also are seeing more resources shifting towards home and community-based services. We’re seeing a growing recognition they can both improve health outcomes and help avoid more costly interventions. Although we have known these benefits for a long time, we’re seeing the rest of the system catching on and starting to catch up.
That didn’t happen by accident. At the federal level, the system has always had an institutional bias. It was the states, back in the 80s, who took on that bias and started what we then called long-term care planning or LTC reform. That transformation started with many of you and your predecessors, and we’re seeing it gather momentum now.
Money Follows the Person has provided flexibility in resources, enabling many Medicaid recipients to transition out of institutions and into home and community-based settings. As you all know, with MFP resources states are working to rebalance their long-term care systems by increasing their home and community-based services and reducing reliance on institutions. This gives older adults and people with disabilities more choices for successful community living.
We need MFP to be implemented on a permanent basis to help us resolve the disparity in access to community living in Medicaid-funded programs. In order to do better, we need more MFP and not less.
We also are transforming what older adults and people with disabilities can expect from the system and how we can improve our services.
The HCBS Settings Rule sets high standards for what a home or community-based setting looks like for Medicaid funding, in order to better support true community integration for people receiving services. States are racing the clock to bring all their settings into compliance by 2019. Tennessee became the first state to receive final approval for its state plan earlier this year. Delaware, Iowa, Kentucky, Ohio, and Pennsylvania have received initial approval.
We’re working with CMS to provide technical support to state Medicaid agencies and other partners as they implement this rule. You can hear more about this at the session tomorrow, but I’ll talk for a couple of minutes about it now.
I know that the work that lies ahead for states is not always easy and can feel overwhelming. State transition plans often require major changes to both state policies and individual HCBS settings. States must also wrestle with how to distinguish HCBS settings from more institutional settings that may have received HCBS funds in the past. And the rule requires heightened scrutiny of any setting that has characteristics that seem to be institutional in nature.
We’re committed to working with states and CMS to preserve the intent and integrity of the rule. We believe this offers an opportunity for collaboration between states and the federal government to have a real impact on the lives of older adults and people with disabilities.
This year and next, we’ll be focused on helping states get their HCBS state plans approved and implemented. We’ll also make sure they have the technical support they need to implement some of the more aggressive elements of the plans.
We’re also working with states to expand the capacity of providers to offer options that are not disability-specific in HCBS settings. For example, ACL worked with CMS to identify promising practices and design a technical assistance series on statewide transition planning.
We also are helping states support providers trying to improve the quality of their HCBS settings by sharing and developing new technical resources on effective practices. And we’ve identified a number of promising practices and innovative approaches for common topics that arise in HCBS settings, including applying the rule to support individuals with wandering or exit-seeking behaviors and making the shift to more individualized community-based day supports.
ACL is encouraging the programs we fund to actively engage with states as they implement the rule. From our regional leadership, to the DD network, centers for independent living, ADRCs, AAAs, and State Units on Aging, ACL funds a number of partners that can be leveraged to help states comply with the rule.
For example, Ohio has worked with their DD council and self-advocate coalition on much of their provider transformation work in recent years.
In Michigan, the state contracted with the University Center for Excellence in Developmental Disabilities at Wayne State University to help conduct independent validations of provider, consumer and case manager assessments around HCBS setting compliance.
In Tennessee, they have a consortium of partners that is largely led by the state’s UCEDD and includes other partners to help non-residential providers transition from facility-based service delivery to more individualized services focused on employment and integrated settings. Several states are using AAAs or ADRCs to validate settings providing HCBS to aging beneficiaries.
Managed Long-Term Services and Supports across the states also are transforming HCBS, as providers explore solutions for compliance with the Medicaid managed care rule.
The change from home and community-based services under fee-for-service arrangements to managed care is accelerating rapidly. Out of $152 billion in Medicaid LTSS expenditures in 2014, more than $22 billion was for managed care LTSS, which has doubled from 2012.
We all expect this kind of expansion will continue across the states. How will we address these growth challenges in the HCBS world? In many states only a handful of large commercial health plans are managed care entities and we know that many of them have long experience in health care, but not much on LTSS. How can we educate them and bring them into the fold?
CMS’ managed care final rule also requires a beneficiary support system to help beneficiaries understand managed care and their rights. Systems must also help beneficiaries navigate the grievance and appeals process, and use data to help the state Medicaid agency identify and resolve systemic issues.
ACL is compiling best practices and lessons learned from demonstration ombudsman programs, SHIPs, and other organizations. One notable best practice is to make counseling available in multiple languages. For example, the Massachusetts Demonstration Ombudsman Program has created a series of videos on health care access rights for people with disabilities in English, Spanish, American Sign Language, Haitian Creole, Portuguese, and Chinese. ACL grantees and stakeholders can be experienced problem-solvers for beneficiaries, and I hope they can be partners in helping states comply with rule.
Person-centered planning also Is helping transform what people can expect from the system. Through person-centered planning, people with disabilities and older adults are playing greater roles in selecting and directing their services.
Here’s a scene I’ll bet most of you have witnessed at some point during your career: A person looking for assistance enters an office. After a long wait, they are asked about their problems and many deficiencies. Then they are shown a list of services that may or may not be helpful. Finally, they are handed a tall stack of confusing forms and sent out the door to figure the rest out themselves.
We’re working to transform this story. Now, you all know as well as I do that we still have a long way to go. In fact, just last week I met with advocates from multiple states who said the so-called person-centered plans coming out of managed care organizations were no more than brief recitations of a limited menu of services offered by their plans—with no attempt to dive deep into the person’s interests and wishes on what supports they need.
But increasingly, states and provider groups are asking the person seeking assistance what they are passionate about, what they would like to achieve, and what matters most to them. Increasingly, the individual is deciding what they need and how to make their services work for them. And with their input, we’re better able to prioritize our work on the policy and program side.
An exciting program illustrating the power of person-centered thinking and self-direction is the Veteran-Directed HCBS program. The program empowers veterans to customize their services to fit their lives. They choose the services they need. They choose who provides them. And they schedule them. The program is now available through 62 of 153 V-A Medical Centers and is partnering with more than 120 ADRCs, AAAs, centers for independent living, and state agencies.
Now, our vision for person-centered practices is to become the core of every aspect of the service delivery system. To help in these efforts, we developed a person-centered counseling training program for front-line staff, and we are working with 13 No Wrong Door systems to pilot the program.
One of them is the District of Columbia’s system. DC is not only training staff who work with consumers, they also are training their leaders and providers. And they’re taking it a step further, working with self-advocates to incorporate person-centered thinking into every aspect of the office’s culture.
I don’t want to overstate—there is still a long way to go. But we are seeing progress.
In addition to helping transform the system, we’re also transforming how WE work.
ACL, NASUAD and many states have experienced the power of breaking down the barriers between the aging and disability communities. Working together, we can be more effective than either community alone. This is the bet we made when we created ACL and we have seen it pay off over and over again.
By bringing disability and aging under the same roof, we’ve been able to learn from each other’s experiences.
For example, the concepts of person-centered planning and self-directed services came from the disability community’s civil-rights advocacy. But today, these concepts are gaining traction in both aging programs alongside disability programs.
The disability and aging communities together have a larger voice and more influence—and ultimately are more successful advocates—than either community alone. For example, ACL has lent extensive staff assistance and expertise to federal partners on major policy initiatives, such as:
- CMS’s development and implementation of the Settings Rule,
- The Department of Labor’s rule on home care workers and compliance with the Fair Labor Standards Act, and
- The Department of Justice’s work in enforcing the requirements of the Olmstead decision for both older adults and people with disabilities.
If we had not come together to form ACL, this kind of sustained engagement as these initiatives developed would have been impossible. The interests of both populations would have suffered.
These benefits are probably not news to you. Many of you have been breaking down the silos between the aging and disability networks at the state and local levels for years.
State agencies and AAAs, centers for independent living, SHIPs, and other community-based organizations are working together on referrals and service coordination. ADRC No Wrong Door systems are bringing aging and disability under one roof. Although we continue to serve the unique needs of the two communities, more and more, the walls separating us are coming down.
And we’re not only transforming how we work together. We’re also transforming how people interact with us.
Shifting demographics, a clear preference for community living, and the complexity of accessing needed health and social services make the information and assistance programs we support ever more critical.
We’ve seen states leading the way with innovative approaches. In Minnesota, for example, people can call in to population-specific centers or visit an office, but they can also chat online.
And a key part of the transformation in how people work with us is the ADRC No Wrong Door system, which is being supported by ACL, CMS and VHA investments. You can hear more about how this is working at tomorrow’s session, but by bringing together state and local agencies, these systems allow people of all ages, abilities, and incomes to get the information and one-on-one counseling they need to make informed decisions about—and access— the services and supports they need, regardless of where they enter the system.
When our friend in the waiting room looking for services has to repeat their story to fewer people, fill out fewer forms, and navigate less bureaucracy, everyone wins.
The coordination and collaboration inherent in a No Wrong Door system also can pay off for the state. For example, Maryland has been working on Medicaid administrative claiming for its No Wrong Door system and was able to drawn down $600,000 in federal funding last quarter. That should translate into $2.4 million annually.
And the District of Columbia has just received the green light from CMS on its plans to use 90/10 administrative matching funds to streamline their eligibility systems.
We’re also helping transform the way our networks of community based organizations survive and thrive within the changing health care environment.
ACL is working with partners like the John A. Hartford Foundation, the SCAN foundation, NASUAD and n4a to provide community-based organizations with tools to partner and contract with health care payers and providers in delivery system reform. We started with learning collaboratives that helped CBO networks build business capacity. Networks received targeted technical assistance from ACL on market analysis, developing service packages, pricing services, negotiating contracts, and more. So far, participants have signed 23 contracts with health plans and other payers, and many more contracts are being negotiated. We’re excited to begin the next phase of this work.
We’re also looking at how technology is transforming the way we will work going forward. Working with health care providers and partners will require use of technology to exchange data—about the people to whom the services are provided, about the services themselves, and about payment for them.
Our knowledge of how to work with older adults, people with disabilities and caregivers—and our person centered practices—makes us important truth-tellers in the process of establishing data standards. We have to be in this game, or else other organizations—like startups with venture capital from Silicon Valley—will take our place. And while they may know technology, they haven’t the depth of knowledge and experience that our networks have in helping people live independently.
We also see transformation in individual program areas.
Let’s start with housing, which is an essential element for community living.
From recent reports we know that as a national average, a person receiving SSI needed 104 percent of their monthly income to rent a modest one-bedroom unit.
Accessibility challenges also continue to be prevalent. 44 percent of homeowners—and 54 percent of renters—report that their homes have at least one step at the entrance.
New ideas, approaches, and resources are needed to address a growing crisis in the supply of affordable and accessible housing across the U.S.
On the positive side, evidence continues to show that housing and health partnerships can lead to improved health outcomes for older adults. We were pleased to see the U.S. Department of Housing and Urban Development announce available funding earlier this year for testing housing-with-services models that may delay or eliminate the need for institutional long-term care. This effort grew out of earlier work supported by ACL, HUD, and the HHS Office of the Assistant Secretary for Planning and Evaluation. We look forward to continuing to work with HUD as this effort is rolled out.
Transportation is also critical if people are to be able to fully participate in the community. We’re working with the Federal Transit Administration, Community Transportation Association of America, other national organizations, and local communities to make transportation more accessible.
We’re doing this by making sure older adults and people with disabilities are at the transportation planning table.
You can hear more about this at Thursday’s session, but to give you one example, in Portland, Oregon, Ride Connection added dialysis patients to their program team and developed a pilot program based on their feedback. As a result they coordinated more with dialysis centers to reduce wait times and provided disability competency training for drivers to better understand the consumer experience.
ACL is also working with HUD, the Department of Transportation, and our sister HHS agency, the Health Resources and Services Administration, on an interagency initiative focused on livable communities for underserved populations.
We are also transforming how the nation protects the rights of older adults and people with disabilities.
For example, we’re working on three major projects on states’ Long-Term Care Ombudsman programs for people living in long-term care facilities. We’ll be talking more about these on Wednesday morning, but let me give you a quick idea.
First, states and Long-Term Care Ombudsman programs are currently implementing ACL’s Ombudsman program rule, which went into effect last month. Through this rule, ACL aims to ensure that long-term care facility residents in every state receive person-centered problem resolution and advocacy. ACL’s regional offices are providing technical assistance to each state for implementation support.
ACL has also recently proposed a redesign of the National Ombudsman Reporting System, which you might know better simply as NORS, for state reporting on the work of their Long-Term Care Ombudsman programs. The redesign is intended to streamline reporting by states, increase reliability and accuracy of the data, implement regulatory requirements, and increase our ability to analyze the data provided by states. The proposal for updating NORS is currently out for public comment.
Last, ACL is currently doing a process evaluation to better understand how Long-Term Care Ombudsman programs operate and consider how to evaluate their effectiveness, efficiency, and outcomes in the future for best serving long-term care facility residents.
We also continue our focus on elder justice and ending elder abuse. We all know the grim statistics. 1 in 10 older people experience abuse, neglect, or exploitation every year. And adults with disabilities are 4 to 10 times more likely to face abuse than adults without a disability.
To turn the tide, we must work together and bring new people to the table. This is what I’ve seen many of you do in your states, and it is what we are doing at the federal level with the Elder Justice Coordinating Council.
We must also expand our knowledge base so we better understand the scope of the problem and how we can most effectively address it. To that end, ACL is developing the National Adult Maltreatment Reporting System, the first reporting system to provide national data on adult maltreatment. We have piloted NAMRS in nine states and we hope to have participation from 41 states when it launches later this year. We would love to get this up to 100 percent state participation. You can learn more about NAMRS at a session tomorrow afternoon.
We’ve also been convening experts from the field to develop voluntary Adult Protection Services guidelines that we plan to release this fall. The guidelines will highlight best-practices for an effective APS system.
And because there is still so much we need to learn, we will soon be awarding innovation grants to advance our knowledge on the topics of abuse in guardianship, self-neglect, elder abuse forensic centers, and abuse in Indian Country.
Finally, we know that fighting abuse takes resources. This is why we were so excited to award the first-ever grants to enhance Adult Protective Services systems to 11 states last year. This year we awarded grants to an additional 13 states. The funding is allowing states to align their data reporting systems with NAMRS, promote multi-disciplinary teams (which have shown promise in communities around the country), and develop innovative tools to assess risk and safety.
We also need to transform how we measure our success. We need measures that capture not only the volume of services and supports provided, but also the quality of the work.
ACL strongly supports any progress toward nationally validated outcome measures for long-term services and supports.
ACL has invested in a number of initiatives that are working toward that goal.
The National Quality Forum group on measuring HCBS quality is close to completing a two-year effort to develop a conceptual framework for measurement, review existing literature for measurement guidance, identify gaps in measures, and make recommendations on HCBS measurement. We’re looking forward to the final report, which will be published in late September.
We also have supported the development and implementation of the National Core Indicators for Aging and Disability. These two related survey instruments continue to inform the field on state system performance.
Additionally, the National Institute for Independent Living, Disability, and Rehabilitation Research, or NIDILRR, is funding a Rehabilitation Research and Training Center on Home and Community-Based Services Outcomes. The result will be a set of recommended measures and procedures to ensure that they support quality-of-life outcomes for people with disabilities and older adults.
We invite you to learn more about our work on quality measures during a session tomorrow afternoon.
ACL has been working with CMS and the National Quality Forum to begin a national dialogue on the development of appropriate metrics for measuring the quality of HCBS over time. We are excited about this work and believe it will establish a strong roadmap for helping states measure the impact of their HCBS investments.
There will be a series of focus groups on this topic during this week’s conference. Those focus groups are being run by the Rehabilitation Research and Training Centers on HCBS Outcome Measurement. The RRTC on Community Living Policy is deeply imbedded in this initiative and will be presenting at the session I just mentioned. The RRTCs are funded by NIDILRR.
I told you we were stronger for all being together!
So although we all know that there still is a lot of work ahead of us, I don’t think it’s overstating to say we are in a time of transformation.
And I don’t think it’s overstating to say that all of you, and the rest of the aging and disability networks who aren’t here with us today, are the reason that transformation is happening.
And we are the reason that transformation will continue, no matter what transition brings to us.
We are the right people to do it. We have strong networks with aging and disability experts working together.
And most important, we ultimately are all committed to the same vision. We have a shared commitment to upholding the dignity of all people, regardless of age or ability. We’re focused on people, and ensuring their rights, choices, and independence to participate fully in their communities.
And together, we will continue to bring about transformation until we fully realize that shared vision.