NCIL - The National Council on Independent Living

THIS TEXT IS THE BASIS OF THE ORAL REMARKS OF THE ASSISTANT SECRETARY FOR AGING. IT SHOULD BE USED WITH THE UNDERSTANDING THAT SOME MATERIAL MAY BE ADDED OR OMITTED

Good afternoon everyone.
I am delighted to be here to talk with you this afternoon. I’d like to spend this time with you sharing some of our efforts at the Administration on Aging to promote more consumer-centered systems of health and long-term supports – and how we hope these efforts will promote increased collaboration across aging and disability networks.

I am so pleased to be sharing the podium this afternoon with my colleagues Percil Stanford and Bob Kafka before such a large group of disability and aging advocates. It is those of you in this room, including Percil and Bob, that are out there on the “front lines” advancing changes in our health and long-term support system on behalf of people with disabilities of all ages.

And I especially want to congratulate the National Council on Independent Living on their 25th anniversary and thank them for bringing together today disability advocates from across the country and Aging and Disability Resource Center grantees. The meetings over the next two days will provide a wonderful opportunity to share your expertise and wisdom and learn new ways to work together on behalf of people with disabilities of all ages.

There are so many exciting new challenges and opportunities that are changing the landscape of how we do business in the area of health and long-term supports and services.

And perhaps our greatest opportunity today is to advance our common mission to make sure that our country’s overall system of supports and services becomes more responsive to the needs and preferences of people with disabilities. Working together, there is much we can do to ensure greater consumer choice and control.

Let me offer a brief background about the Aging Services Network. I’ve had the privilege of working in the Aging Services Network for many years – a Network that was originally envisioned by the framers of the Older Americans Act in 1965.

The framers anticipated the growth in our older population, and they charted out a vision for a nationwide network of public and private agencies and organizations - at the national, state and community level - organized around the common goal of ensuring the dignity and independence of older people.

The Older Americans Act charges us with the specific responsibility to serve as the principle advocate for older people, and to make sure that our nation systematically coordinates the supports that will enable older individuals to remain independent in their own homes and communities for as long as possible.

The Aging Network is making a real difference in the lives of millions of people all across this nation, and it has a proven capacity to work with our health and human services partners to bring together policymakers, providers, advocates and consumers to modernize and improve the way this country provides long-term supports and services.

The positive impact of the disability community in this country, including the work of the National Council on Independent Living, is well known. You have been trailblazers in creating real systems change at the State and Federal levels, and in making those systems consumer-centered!

Much of the progress this country has made in putting consumers in the drivers seat when it comes to controlling the services they receive is directly due to the hard work of disability advocates like your-selves.

One of my greatest hopes in working with CMS to create the Aging and Disability Resource Center initiative is:

to see aging and disability network professionals work collaboratively
to ensure the greatest impact for people with disabilities of all ages.

sharing a vision and
coordinating our approaches
to collectively advance our agenda
to promote independence and control for people with disabilities of all ages.

There has been great progress in recent years in strengthening the partnerships between aging and disability networks, including in the development of ADRC demonstrations, and I applaud all of you all for this important work.

We can make an even greater impact at all levels – federal, state and local – if we work together – rather than alone. Together we need to advance our common agenda to realign existing funding sources – so that more of our public and private dollars are directed at affordable, cost effective, AND consumer-centered home and community-based supports.

My mission since arriving at AoA has been to make long-term care more person-centered and more responsive to the needs and preferences of the individual. Towards that end, we have developed a strategy to advance meaningful and important changes in health and long-term support systems...

changes that will help rebalance long-term care and improve the quality of life for millions of people.

Make it easier for individuals, their families, and others to learn about and access existing services and supports.
Enable older individuals to have ready access to low-cost prevention programs that have proven effective in reducing the risk of disease, disability and injury.
Provide more flexible options to people who are at high-risk of nursing home placement so they can remain at home.

We call our overall strategy Choices for Independence – giving Americans what they want -- and it builds on best practices and strategies that we’ve pulled directly out of the aging and disability networks. Best practices and strategies that have already been implemented in many parts of the country….and that we are now replicating through our discretionary grant programs with our Department of Health and Human Services partners.

I want to spend a few moments talking about our efforts to help individuals learn about and access services through the CMS and AoA Aging and Disability Resource Center program – but let me begin by briefly outlining the other two components of our strategy – prevention and flexible service options.

One system-wide change that Choices for Independence advances is to make it easier for people to learn about and take advantage of low-cost evidence-based prevention programs that can improve their health and quality of life. These interventions involve simple tools and techniques that can be deployed by service providers at the community level to assist individuals in such areas as falls prevention, chronic disease self-management, exercise and in other areas.

This is the goal of our Evidence-Based Disease and Disability Prevention Grants Program launched in 2003 and expanded this past year in partnership with the Atlantic Philanthropies. We are now gearing up programs in over 75 communities across 24 states. Our long-range vision is to see these evidence based programs readily available in every community across the country.

Another important strategy we are advancing under Choices focuses on helping people who are at high risk of nursing home placement to remain at home by giving them more choices.

This includes using flexible service models, including consumer-directed models, to give individuals greater control over the types of services they receive so they can better address their own particular needs and circumstances.

As you know, the Cash and Counseling Model has shown us that we can effectively turn control over to consumers – both younger and older individuals alike – and successfully maintain high levels of quality and consumer satisfaction. Since 2003, we have been working with our partners in HHS and the Robert Wood Johnson Foundation to support the replication of this model nationwide.

This year, we are launching a Nursing Home Diversion program to help States offer flexible, consumer-directed services to individuals who are at high-risk of nursing home placement, but not eligible for Medicaid.

We are calling this our Community Living Incentive, and it will become our version of the “Money Follows the Person” demonstration – except it will be a prevention strategy that gets to people BEFORE they enter a nursing home and are forced to impoverish themselves.

The third component of Choices – and this is the strategy you may be most familiar with and the one most relevant to our discussion today – is the work AoA and CMS initiated to help states and communities establish “one stop shop” entry points to all long term supports and services through the Aging and Disability Resource Center initiative.

By empowering consumers with disabilities of all ages with information, personalized support, and streamlined access, they will be better equipped to make informed decisions and be better able to choose the alternatives that best meet their unique needs and preferences.

Streamlining access to long-term supports and services is key to the success of ADRCs. We all know from experience that obtaining the array of supports and services needed to help an individual remain as independent as possible can sometimes be a daunting task.

You know this story – and I know it too well also -- …and that’s why I’ve been so determined to change this system while I’m here!

My vision is that ADRCs will serve as the visible and trusted resource for access to long-term services and supports in every State and Community in this country.
For this reason, we believe ADRCs need to be a key element in every State’s rebalancing agenda –

We believe that these two advocacy networks – both with long histories of helping people with disabilities to remain at home and in their communities – can effect the greatest change and provide the greatest leadership to support people with disabilities of all ages by working together in a coordinated fashion.

Historically, at the Federal, State and local levels separate entities have been created to serve different target populations including the elderly, people with serious and persistent mental illness, people with developmental disabilities and other populations.

In many ways, these separate service “silos” have helped to focus attention on the unique needs and circumstances of each target population.

As more and more younger individuals with disabilities live longer into old age, and as increasing numbers of older people develop disabilities, there is greater common ground among us.

I believe that the time is now to effectively support all individuals with disabilities –

not by breaking down the respective networks,

but by building stronger bridges between them
through effective partnership and collaboration.

ADRCs provide an opportunity to assist us in moving from separate systems for different target populations with limited or no coordination to new systems that

acknowledge our differences,
maintain our identities, and
leverage our unique and individual experiences
to create the maximum benefit to the individual.

Through ADRCs we have the opportunity to maximize our resources in support of people with disabilities and also to provide more effective supports for the increasing number of individuals who have needs for services that cut across traditional aging and disability network lines.

Long term services and supports provided in a collaborative, coordinated manner across aging and disability systems will ultimately result in a more positive experience for the individual and their family.

In the nearly four years since the ADRC initiative began, we have seen a number of models emerge. Many of these models represent strong new partnerships between aging and disability networks.

Of course – we still have much work to do in developing effective ADRC models that serve people with disabilities regardless of age or income.

AoA and CMS have collaborated since the onset of the ADRC initiative to provide strong technical assistance to states in enhancing their systems of information and access to long-term supports.

I am pleased to announce at this time that AoA will be providing support to the National Council on Independent Living so they can help us in ensuring that the ADRC systems being developed across the country represent strong partnerships between aging and disability networks and are able to most effectively serve people with disabilities regardless of age.

We look forward to this new partnership with NCILand hope that you will all join us in our work to create better systems across aging and disability networks in support of people in need of long-term supports and services.

In closing, let me just express that at the federal level, we will continue to provide leadership, technical assistance and some of the funding necessary to create better systems to support people with disabilities.

But all of you in this room are the ones who are on the front lines of change, you are the change agents at the state and local level.

By moving forward together as a unified network of advocates and providers, we can create tremendous synergies and exert much greater influence in health and long-term care.

We need to accept the challenges and seize the opportunities in front of us. And we need to start now.

I believe it is the right thing to do, and it is the right time to do it.