DRAFT

Presentation for:
Aging and Disability Home and Community Based Services Advocacy Forum
Sponsored by Heritage Area Agency on Aging
Mercy Medical Center, Hallagan Education Center
September 13, 2010
By Bill Gardam

The Olmstead decision… there are three basic principles that all of us
can probably agree on...
• We can agree that no American should have to live in a nursing
home or state institution if that individual can live in a community with
the right mix of affordable supports.
• We can agree that we all have the right to interact with family and
friends in our communities...to make a living...and to make a life.
• And, we can agree that it will take time, effort, creativity and
commitment from all of us to make this a reality.

Clinton administration Secretary of Health and Human Services Donna Shalala

Hello. I am very pleased to be here today to briefly talk about Olmstead in

Iowa. I am going to start by sharing some examples of situations families

face everyday… then discuss what is being done in Iowa... and close by

sharing some questions we should all ask to help with needed next steps.

The Context

Daniel is 14 years old. He suffers from emotional illness, including

psychoses and depression. He was cared for at home by in-home workers,

funded through Medicaid. He was functioning well. However, 2 years ago,

Medicaid cut back on his coverage, his condition deteriorated, and since then

1
 DRAFT
he has been bouncing between the state psychiatric hospital and residential

group home settings.

Pat has several complex needs… including eye, orthopedic, gastro-intestinal,

and neurological. Her doctors say it is a miracle she is still alive after having

a stroke at age 57. She cannot talk or walk, and needs 24-hour care. She

lives at home, communicating through eye movements. Pat’s private

insurance had been covering her home health care, but it has reached its

limits and her family is now looking to Medicaid to cover the care that she

needs… but, Medicaid says it will pay for only seven hours of home care

each day.

A complaint was filed in Illinois on behalf of a person with a

developmental disability after her guardian and an advocacy organization

gave up trying to move her from a 10-bed facility to a more independent,

community-based living arrangement. The complain alleged that the State

failed to provide funds for a more integrated placement, and was forcing her

to remain in a more restrictive living environment.

2
 DRAFT
The federal Office of Civil Rights got involved in this case she is now placed

in a community-based, integrated living arrangement that was approved by

her guardian and paid for by Medicaid happened.

A person with a disability living in an institution in Nebraska filed a

complaint alleging the State had failed to take action to permit him to live

closer to his family in a less restricted setting.

Again, the federal Office of Civil Rights intervened and he is now living in a

private apartment closer to his family and enrolled in vocational training.

These stories are taken from the docket of cases handled by the National

Health Law Program, a public interest law firm, and the federal Office of

Civil Rights web site. These are NOT Iowa cases…. But they could be.

While the differences in these cases are apparent, there are common threads

running through them. All of these individuals are disabled, of limited

income, and dependent on the state Medicaid program to cover their

healthcare costs. Each has ongoing health care needs. And, none of them

3
 DRAFT
need to be institutionalized because each can be cared for in less restrictive

home and community-based settings.1

Over the past three decades, remarkable advances in medicine have

occurred2. Individuals who would not have lived thirty-five years ago are

living today. Many of these individuals have complex medical needs, while

others - particularly adolescents and the elderly - present an intertwined array

of psycho-social problems that are difficult to treat3… but still, many of these

individuals are able to live and be cared for in their own homes today4,5.

1
Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581 (1999); Helen L. v. DiDario,\ 46 F.3d 325 (3d Cir.
1995). Advocacy also has focused on challenging denials of Medicaid\ eligibility and services for
individual claimants. Ash v. Ohio Dep't of Human Serv.,\ 126 Ohio App.3d 211, 709 N.E.2d 1257
(Ohio App. 4 Dist. 1998); Leach v. Comm'r, 1995 WL\ 495907 (Va. App., Aug. 22, 1995); Madsen v.
Dep't of Health & Welf., 114 Idaho 182, 755 P.2d\ 479 (Idaho App. 1988).
2
Kaiser Family Foundation, Long-Term Care, Medicaid's Role and\ Challenges 3 (Nov. 1999)
(available from Kaiser Family Foundation, Washington, DC).
3
Paul W. Newacheck et al., An Epidemiologic Profile of Children with Special\ Health Care Needs,
102 Pediatrics 117 (July 1998).
4
Robert Prouty and K. Charlie Lakin, Residential Services for\ Persons with Developmental
Disabilities Status and Trends through 1998 (on file with\ University of Minnesota, Research and
Training Center on Community Living, Institute on\ Community Integration) (1999) (stating that the
number of individuals with developmental\ disabilities in public institutions has declined from 149,892
in 1977 to 51,485 in 1999).
5
Health care today is quite different from the care provided thirty-five years ago, when Medicaid was
enacted. At that time, health care and Medicaid were heavily focused on the provision of
institutionally-based services, which is what has resulted in what was referred to earlier as the
“institutional bias” of the Medicaid program; that is a preference to pay for the use of institutional beds
over the use of community-based services.

4
 DRAFT
While often less expensive than institutional care, home and community-

based care is still a financial drain on families.6,7 And while, private

insurance does provide some coverage it is limited assistance8 and Medicaid

is increasingly being looked at to cover the costs of providing institutional

and community-based services (42%)9.

When combined with the rapidly approaching “Medicaid perfect storm” of a

continued recession, increased numbers of unemployed who have lost

employer-sponsored health care coverage, and the aging baby boomer

demographic10, not surprisingly, State’s are looking for ways to control costs

and be able to effectively deal with the 14.5% growth projected for Medicaid

6
Studies show that, on average, Medicaid dollars can support nearly three older people and adults with
physical disabilities with HCBS for every person in a nursing home. Source: E. Kassner et al., A
Balancing Act: State Long-Term Care Reform (Washington, D.C.: AARP Public Policy Institute, July
2008); http://assets.aarp.org/rgcenter/il/2008_10_ltc.pdf.
7
Since nursing facility care is a particularly expensive form of long-term care both in terms of total
cost ($77.9 billion in 1995) and average per-resident cost $3,800 per month (Chapin et. al. 1998), both
the federal government and the states can gain tremendously from a long-term care strategy that
emphasizes aging in place rather than early nursing home admission.
8
Kaiser Family Foundation, Long-Term Care, Medicaid's Role and\ Challenges 6-10 (Nov. 1999)
(available from Kaiser Family Foundation, Washington, DC).
9
National Conference of State Legislatures, Deinstitutionalization of\ Persons with Developmental
Disabilities: A Technical Assistance Report for\ Legislators (1999) (available from
http://www.ncsl.org/programs/health/Forum/pub6683.htm).
10
The growth in aging population is also now being called ― silver tsunami‖ stirring just off the horizon.

5
 DRAFT
in 2010 (includes 5.6 percent enrollment growth and 8.9 percent cost growth,

attributed to unemployment rates).11

Most states are reducing costs by shifting funding from institutional care to

home and community-based waiver services12. This is an important step

towards making a difference and correcting the “institutional bias” of

Medicaid because we all know that services follow funding streams13. This

has progressed slowly in most states due to fear of substantial growth in the

use of home and community based services that will place more demands on

11
Medicaid LTC spending, including community- and homebased services (HCBS), is expected to
increase over the next decade. Projected combined federal and state Medicaid expenditures for 2009
represent a 9.9 percent increase over the prior year, for a total of $378.3 billion. This is the
most rapid spending growth (10.7 percent) since 2002. The primary cause of this increase is postulated
to be the rising unemployment rate during 2009, which resulted in a 6.5 percent increase in Medicaid
enrollment. Projections for 2010 Medicaid include 5.6 percent enrollment
growth and 8.9 percent cost growth, again attributed to unemployment rates. If the economy continues
to improve and the unemployment rate decreases, Medicaid is projected to grow an average of 7.5
percent per year, due primarily to increasing age-related beneficiary enrollment
and LTC services for the disabled and elderly populations. Source: Issue Brief: Medicaid Long-term
Care: The ticking time bomb by Deloitte Center for Health Solutions.
www.deloitte.com/centerforhealthsolutions
12
National Conference of State Legislatures, Deinstitutionalization of Persons with Developmental
Disabilities: A Technical Assistance Report for Legislators 2-4 (2000) available from
http://www.ncsl.org/programs/health/Forum/pub6683.htm; American Federation of State Municipal
and County Employees, Opening New Doors: The Transition from Institutional to Community Care 1-
2 (1999), available from http://www.afscme.org/pol-leg/opend02.htm; Fred Thomas, Ambulatory and
Community-Based Services, 20 health Care Financing review.1, Summer 1999.
13
Congress enacted section 1915© of the Social Security Act as part of the Omnibus Reconciliation
Act (OBRA) of 1981. Until then, comprehensive long-term care services through Medicaid were
available only in institutional settings. Although mandatory home health services and optional personal
care services were available as Medicaid benefits before OBRA 1981, states had largely restricted their
use, only allowing payment for medically oriented types of services, such as skilled nursing care
provided in the home.
6
 DRAFT
14
already limited Medicaid budgets . As a result, most states, as does Iowa,

offer only limited numbers of waiver slots, for example 200 slots per year.

Medicaid beneficiaries who would otherwise qualify for community-based

care end up being placed on waiting lists when these slots become full. Iowa

has 25,410 waiver “slots” approved for services slots and a waiting list 5,123

as of August 2010.

There is growing urgency to clarify the role of Medicaid in providing home

and community-based services, capping waiver services and using waiting

lists for states since the U.S. Supreme Court's Olmstead v. L.C. decision,

which you heard earlier holds the Americans with Disabilities Act to prohibit

states in their public programs from unnecessarily institutionalizing persons

with disabilities15.

Despite its potential boundaries, advocates for people with disabilities

generally view Olmstead as a watershed in encouraging community-based

placement over institutionalization.

14
Eighty-four percent of those age 50 and older want to remain in their homes as they age. Source:
AARP, Beyond 50.05 Survey (Washington, D.C.: AARP, April 2005);
www.aarp.org/research/housingmobility/indliving/beyond_50_communities.html.
15
527 U.S. 581 (1999).
7
 DRAFT
Olmstead raises community-based care to a right, rather than a preference or

a mere choice. And, a State that fails to consider and actively plan for

community-based care runs the risk of being found to have discriminated

against people with disabilities and this is happening right now.

Developing what Olmstead refers to as a "comprehensive and effectively

working plan" for providing services to people with disabilities in the most

integrated settings and using a waiting list to move people out of institutions

versus creating the ability to keep institutions full16 is the best plan to avoid

lawsuits and it is what Iowa is doing.

As states plan, they should also complete 6 tasks to be successful…

First, review existing bed utilization at nursing homes, intermediate care

facilities, state mental health institutes and state resource centers to

determine whether persons have been appropriately placed in these

facilities. This does not mean a review is conducted to confirm that people

need to remain in the institutions but rather it should determine if they can

appropriately be placed in a less restrictive community-based setting;

16
Olmstead, 527 U.S. at 605-06.

8
 DRAFT
Second, develop real plans and take action to move these individuals out

of the institutions;

Third, increase pre-admission and annual screening and assessment

mechanisms in place for all facilities to avoid inappropriate placements in

the future17;

Fourth, create and fund alternative community-based services… because

you can’t move people into community-based setting if they do not exist

in the first place;

Fifth, develop information materials for consumers with ongoing chronic

care needs and disabilities so they can make meaningful and informed

decisions about long-term care services; and,

Sixth, do all of this with the input and support of people with disabilities

and their advocates so they have the opportunity to help shape the plans in

17
OBRA 1987 required that states implement Pre-Admission Screening and Resident Review
(PASRR) evaluations prior to institutionalization of those living with mental illness or developmental
disabilities. Mandates for screening other subgroups of long-term care users (e.g., those with dementia
or traumatic brain injury) were not included in PASRR requirements. The PASRR requirements
created distinctly separate service referral procedures for two groups of consumers but did not require
states to divert other long-term care users from institutional care. The federal Office of Inspector
General, in 2001, found that even though the PASRR system was intended to divert two specific
subgroups of users, it was not adequately implemented in all states.
9
 DRAFT
ways that are effective in meeting their needs in a non-discriminatory

manner.

The changes that Congress has made and the impact that Olmstead has

already brought about are very real in Iowa.

And, the good news is that creative services and funding options that provide

people in need of services with the ability to direct their own care, use their

own natural support systems and to make their own choices exists in Iowa

today.

But we still have many challenges and real questions to address, such as…

can and should there be funding available for both institutional care and

home and community-based services? The simple answer is… yes.

A more difficult question is… how do we, as a state, make it work so that we

create and fund community-based services and systems of care that work

together that can meet the demand placed on us by the growing “perfect

10
 DRAFT
18
storm” mentioned earlier without adding more money to the system. The

good news here is that it is possible to do this… and it is already being done

in Iowa… but we need to do more.

So, what is the State of Iowa doing?

In May 2005, the Iowa legislature passed HF 841, the IowaCare Medicaid

Reform Act. In addition to expanding Medicaid health care coverage for

low-income people, the act mandated fundamental long term care reform

under a section of the law called “Rebalancing Long-Term Care.”

HF 841 defined the intent of the long term care provisions as:

- Improving access,

- Expanding choices about service delivery, and

- Building the capacity of Iowa communities to sustain independent

living for people with disabilities.

The legislation also created a legislative committee, the Medical Assistance

Projections and Assessment Council, to oversee all Medicaid reform

18
Continued recession, increased numbers of unemployed who have lost employer-sponsored health
care coverage, and the aging baby boomer demographic, page 5.
11
 DRAFT
initiatives and review progress on other initiatives relating to self-direction,

quality management and information technology. As of June 30, 2009, nearly

32,000 people have been able to enroll in Medicaid because of HF841.

In April 2007—HF 451— was introduced that called for development of a

“single point of entry long-term living resources system”, considered by state

policymakers to be a key to the state’s reform efforts. This was envisioned

as an integrated system that helps Iowans navigate the many private and

public long term care resources. A strong part of this legislation is that it

required a team of state agency representatives, legislators, consumers,

advocates and providers work together.

Iowa has also moved on several other fronts.

- In October 2006, Iowa launched a new Cash-and-Counseling program,

“Consumer Choice Option,” which started in a 12-county north central

area of the state and is now statewide. The program allows waiver

participants to direct their own services.

- In April 2007, Iowa became the first state to use the Deficit Reduction

Act authority to receive federal approval to add home and community

12
 DRAFT
based services (HCBS) to the Medicaid State Plan, instead of using the

Medicaid waiver system. Iowa’s new benefit provides statewide home

and community-based case management services and habilitation

services at home or in day treatment programs.

- Iowa received a $51 million Money Follows the Person Rebalancing

Demonstration grant in 2007 and a $2.3 million Real Choice Systems

Transformation grant in 2005 to improve information and access,

streamline the eligibility and assessment process, and develop a plan to

expand home and community based services.

- In August 2008, the Single Point of Entry Resource Team provided

eight recommendations to the Iowa legislature to strengthen the HCBS

initiatives.

- A Pre-screening process for all admissions to nursing homes was

started in 2005 as part of Iowa’s compliance with the federal Pre-

Admission Screening and Resident Review (PASRR) requirement and

which is now being reviewed in 2010 to expand to include a second

step “assessment” for mental health and mental retardation issues for

all people prior to admission to a facility.

13
 DRAFT
As I said earlier, much is happening and change continues now with the most

recent action involving development of a comprehensive state mental health

and disability services plan, which you may have heard of as the DHS

Olmstead Plan for Mental Health and Disability Services. This plan is the

first comprehensive mental health and disability services plan to be

developed for Iowa in 17 years… and, when completed Iowa will be one of 5

states in the country to develop and use a combined mental health and

disability services plan.

The new state plan is referred to as the “DHS Olmstead Plan” because of the

importance of the Olmstead Supreme Court decision and the many good

quality of life and quality of care issues and opportunities this decision

presents for Iowans.

I mentioned the importance of having people with disabilities and their

advocates involved in planning and action. And, this has happened with all

of the above activities and in particular DHS Olmstead Plan for Mental

Health and Disability Services which I was involved in presenting to over

1,000 Iowans to date, including the Olmstead Consumer Task Force, The
14
 DRAFT
Iowa Mental Health Planning Council, the Mental Health and Disability

Services Commission, and many others.

This is one time where we are able to develop the right services at the right

time for the right reasons without having change be dictated to us by the

courts or federal government.

When we met with the Olmstead Consumer Task Force, they were ready to

talk and arrived with a list of questions they believe should be asked

regarding all state policies and legislation… and, they are correct... to start to

make change, we must first stop to listen, ask questions and hear the answers

to those questions. The questions are available in the back of the room and

we can also share them by email with you. But very quickly, here they are…

15
 DRAFT

Checklist for Determining Whether Legislation

Or Policies Meets the Mandate of the Olmstead Decision
Olmstead V. L. C. (527 U.S. 581, 1999)

This checklist provides key components found, in whole or part, in legislation, policies, and rule
making that are in compliance with the Olmstead decision of the US Supreme Court. As you prepare or
review draft legislation, policies, and rules, ask yourself:

Does this legislation, policies, or rules:

 Move Iowa toward a system of community-based services?
 Does the proposed action increase community capacity to provide
supports and services that older Iowans and people with disabilities can
use to remain in their homes and local communities?
 Ensure choice?
 Does it avoid forcing people to live in an institution or a nursing home
in order to get essential care or services?
 Protect human rights by supporting self-direction?
 Does it respect the rights of people to choose where they will live, what
services they will use, and from whom they will get these services?
 Avoid inappropriate institutionalization?
 Does it call for screening immediately before and regularly after
placement of all people entering or living in nursing homes and other
institutions, to determine their level of need and identify strategies to
overcome barriers that keep them from living in the community?
 Help people return to their communities?
 Does it move people off waiting lists and into community-based
services at a reasonable pace versus keeping them in an institution?
 Make optimal use of available funding?

 Does it seek out and tap federal and other funding opportunities for
home and community-based services?
 Fight institutional bias?
16
 DRAFT
 Does it fund community-based services and institution-based services
equally?
 Does it support implementation of the US Department of Justice
settlement with the State Resource Centers in Iowa?
 Fund existing programs that support community-based services?
 Does it provide funding for services that encourage integrated,
community-based services?
 Avoid caps that compel institutional bias?
 Does it avoid or remove caps that have been placed on covered home
and community services, so that caps can neither force
institutionalization nor lead to the denial of services?
 Simplify eligibility?
 Does it create a single, consistent set of eligibility requirements for
Iowa Medicaid Waiver programs?
 Eliminate discrimination?

 Does it use eligibility criteria that do not discriminate against older

people or people with disabilities?
 Reinforce natural support systems?
 Does it permit funding to pay for natural supports as well as agency-
based services?
 Fund people, not programs?
 Does it provide flexible funding that allows individuals practicing self-
direction to purchase the services and supports they need to accomplish
their own goals, and to spend funds in their own communities so that
local market forces shape more efficient, effective services?

If you can answer yes to all of these questions when implementing a new

policy or creating or modifying legislation, then go forward... if you have to

17
 DRAFT
answer no to any of these questions, perhaps it should be re-reviewed and

changed until it can.

The challenges ahead are many, resources are slim, but the pay-off has

potential to be the proverbial win-win situation; lowering health care costs

while at the same time, serving more people and supporting consumers’

preferences and motivation to remain independent and engaged in

community life.

Thank you.

END

Presentation for:
Aging and Disability Home and Community Based Services Advocacy Forum
Sponsored by Heritage Area Agency on Aging
Mercy Medical Center, Hallagan Education Center
September 13, 2010
By: Bill Gardam

18