Living Independently

FY 2009 Institution vs Community-Based Medicaid Services for Older and Younger Americans with Disabilities

By Steve Gold

Each State’s FY 2009 Medicaid expenditures provide extremely helpful information to analyze your State’s distribution of its Long Term Care expenditures between its Institutional versus Community-Based Services.

Follow the Medicaid money and you’ll see how committed your State really is to ending unnecessary institutionalization of older and younger Americans with disabilities.  How your state allocates its expenditures demonstrates its commitment to provide the elderly and younger persons with disabilities a real choice between unnecessary institutionalization and living in the community.

Let’s repeat - “show us the money” and where your state spends it, and you can see how much your state respects both the ADA and the Olmstead decision.  Remember that the Supreme Court in 1999 - more than ten years ago -told states to end unnecessary institutionalization!  The FY 2009 data was just released by Thomson Reuters, an independent contractor which compiles the data submitted by each State to the federal funding agency. Thanks very much.

How much progress has been made?  Let’s compare the past five years.

In FY 2004, States spent 74.9% of their total Medicaid LTC funds for “Aged/Disabled” [i.e., older and younger Americans with disabilities] Services in nursing homes, and 25.1% in the community.

In FY 2009, States spent 66.2% of their total Medicaid LTC funds for “Aged/Disabled” Services in nursing homes, and 33.8% in the community.

In dollar terms, in FY 2004, States spent about $46 billion on institutional care and $15 billion in the community.

In FY 2009, States spent about $50 billion on institutional care and $26 billion in the community

The good news is that there was an 8% shift towards the community in those five years.  The bad news is that ten years after the Olmstead decision, States are still spending nearly twice the amount of Medicaid LTC funds on nursing homes than on services in the community, despite the overwhelming survey data showing that people want to stay at home.

There is nothing magical about where your State allocates its Medicaid money.  Tomorrow States could turn the FY 2009 upside down and spend 66.2% in the community instead of in nursing homes - IF States wanted to do so. Congress and CMS has given States enormous flexibility during the past five years but most States have not taken advantage of the options.

Why has the change been so slow?  State legislatures and Governors seem to be very beholden to the nursing home industry, which definitely knows how to play the political process much better than elderly and disabled advocates.

Until the political pressure from the people with disabilities - regardless of age- increases, the nursing home industry will prevail.

Let’s look at how your State did in FY 2009 with its Medicaid Long-Term Care expenditures for older and younger Americans with Disabilities:

Some States have consistently done very poorly and have been consistently below the national average. Some States conversely been consistently above the national average.

Some States seem ripe for class action Olmstead litigation.

What sanctions are CMS and OCR planning for those States that have both lengthy waiting lists for community-based services and spend disproportionately on nursing homes?

% nursing homes  % community
National …………………66.2% ………… 33.8%

Alabama ………………….85.1%  …………14.9%
Alaska …………………. 44.3 ………….55.7
Arizona ………………… 78.6…………..21.4 *
Arkansas………………… 71.0 …………..29.0
California………………. 44.9 …………..55.1*
Colorado………………… 56.4……………43.6
Connecticut……………….75.7……………24.3
Delaware………………….87.5……………12.5
D. C……………………..54.4……………45.6
Florida…………………..79.5……………20.5
Georgia…………………..74.0……………26.0
Hawaii……………………80.8……………19.2*
Idaho…………………….56.7……………43.3
Illinois………………….80.2 …………..19.8
Indiana…………………..83.8 …………..16.2
Iowa……………………..70.4 …………..29.6
Kansas……………………60.6……………39.4
Kentucky………………….80.7 …………..19.3
Louisiana…………………67.5……………32.5
Maine…………………….75.5 …………..24.5
Maryland………………… 85.1……………14.9
Massachus……………….. 64.1……………35.9*
Michigan………………….78.5……………21.5
Minnesota…………………42.5……………57.5*
Mississippi……………….84.2……………15.8
Missouri………………….66.3 …………..33.7
Montana…………………..66.1……………33.9
Nebraska………………….75.1……………24.9
Nevada……………………65.9 …………..34.1
New Hampshire……………..82.3……………17.7
New Jersey………………..78.8……………21.2
New Mexico………………..31.2……………68.8
New York …………………61.9……………38.1*
North Carolina…………….57.2……………42.8
North Dakota…………….. 89.8……………10.2
Ohio……………………..75.9 …………..24.1
Oklahoma………………… 67.6……………32.4
Oregon………………….. 43.8……………56.2
Pennsylvania…………….. 82.1……………17.9
Rhode Island…………….. 95.6…………….4.4*
South Carolina…………… 72.1……………27.9
South Dakota…………….. 86.0……………14.0
Tennessee……………….. 91.1…………….8.9*
Texas…………………….55.5……………44.5*
Utah……………………..80.4……………19.6
Vermont…………………..67.5……………32.5*
Virginia………………….64.9……………35.1
Washington ……………….38.0 …………..62.0
West Virginia……………. 74.5……………25.5
Wisconsin ………………. 74.0 …………. 26.0*
Wyoming ………………….76.6……………23.4

* Data may not include certain LTC expenditures with managed care or 115 waiver data not available.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. As of August, 2010, Information Bulletins will also be posted on my blog located at http://stevegoldada.blogspot.com/ To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com

ADAPT, Around the country, System Change

An Open Letter from ADAPT to the Disability Community on the 20th Anniversary of the Signing of the Americans with Disabilities Act

Sisters and Brothers in the Disability Community:

As the 20th anniversary of the signing of the Americans with Disabilities Act draws near, we approach the milestone with mixed emotions.  Securing national civil rights legislation, protecting the rights of people with disabilities, was truly historic.  It is important that we recognize the incredible nature of this accomplishment and the hard work of those that made this happen, but 20 years after President George H. W. Bush signed this civil rights legislation into law and as our community is preparing for the celebrations, we pause in disappointment that the promise of freedom has still not reached our sisters and brothers in nursing facilities and other institutions.

Our sisters and brothers remain locked away, unseen and unheard.  For them, the act is just words on paper.  They are not given the opportunity to exercise their civil rights under this law because they still do not have the basic freedoms that other Americans enjoy.

As the Anniversary date draws closer, they may hear about the progress our community has made over the past 20 years, but knowing that you are protected against discrimination in employment means nothing when the hub of your life is a bedroom you share with a stranger.  Knowing that buildings and public accommodations are accessible means nothing when the facility staff won’t let you leave; and even having access to lifts on buses - as dear to our hearts as that is - means nothing when you cannot afford to go anywhere on the allowance that is left over after the institution has taken its share of your money.

When we gather together as a community, we must remember that our sisters and brothers in institutions will not be toasting those that authored or advocated for the Act.  They will not be celebrating independent living, either as a movement or personal achievement, and they certainly won’t share in the power or pride of the disability community.  For them, July 26th will be the same as every other day in the institution.

Recently, ADAPT has been criticized by some of the provider-based advocates in our community because we are publicly demanding that Speaker Pelosi sign onto the Community Choice Act and agree to eliminate the institutional bias once and for all.  They tell us that publicly questioning “our friends” is inappropriate.  We are told we should be grateful for the efforts that have been made so far, and that we must be patient because change takes time.

We will not apologize for our impatience.  We do this because our brothers and sisters have waited long enough for their freedom.  We cannot sit by, patiently and quietly waiting for our government to give our people the freedom which should be our birthright.

We had great hopes for President Obama and this Congress.  Many of us believed that his promise for change included the promise of freedom.  When President Obama was taking the oath of office with his hand on Lincoln’s bible, it seemed like fate was telling us that he would free our people.  When the President and Congress took up health care reform, we were sure that they would finally eliminate the institutional bias, and we hoped that this historic anniversary in the disability community would be celebrated with historic change.  Unfortunately, the President and Congress did not have the political will to make this happen.  While we recognize that some gains were made, unlike any other class of Americans, our freedom remains a state option.

It is, indeed, true that one of the tools we are using to help people leave institutions and move into the community is the Supreme Court’s Olmstead decision, which is based on the requirements of the ADA, and it is true that President Obama’s administration has demonstrated an unprecedented commitment to enforcing the Olmstead decision.  But such efforts are transitory.  We have seen, during the last 20 years, that new administrations have their own priorities, and although there may now be a commitment to enforce the Olmstead decision, the pendulum will ultimately swing back in the other direction.

We also know that the gains we may make in the courts are hard-fought, slow, and constantly subject to attack.  Even right now, as many in the disability community commemorate the ADA’s anniversary, the Attorney General in Connecticut is coordinating legal efforts by the states to fight against some of the recent gains we have made in court which will allow more of our people to live in freedom.  Ironically, the deadline for states to join the effort is just one day after the anniversary, July 27th.

In America, freedom shouldn’t ever be optional, but - in fact - for us it is. While federal Medicaid rules require states to pay for institutional placement, community-based alternatives are state options and continually subject to elimination in state budget cuts.  It is ironic that as we celebrate a civil rights victory that is 20 years old, our freedom is becoming even more precarious and the situation becoming more dire.  States, facing record budget shortfalls, are cutting the services that support community living options for seniors and persons with disabilities.  These budget cuts force people into unwanted placement, stealing from them much of what is most precious: their homes, their families and their freedom.

Some people have moved across the country to a different state to get supports and services to live outside of the institution.  There, they have been able to share in the promise of the ADA, but many people don’t know about the services available in other states or simply might not be able to make the journey on this modern underground railroad.

But as long as community services are only an option, those who have escaped to freedom cannot escape the fear.  No place is safe because their freedom can easily disappear at the whim of state policy makers.  They will be called upon to help solve their state’s budget crisis by sacrificing their freedom, home and lives.

We all need to recognize that through personal circumstance or state policy change any of us can lose our freedom.  No one in our community is exempt.  No one is safe.  No one in our community can afford to be comfortable, but it is also our hope that - from this discomfort - the disability community will be mobilized to take action and, together, we will build on a 20-year legacy to address this injustice.  Our movement isn’t about the civil rights for some of us; it is about the freedom of all of us.

We cannot wait any longer.  ADAPT asks you, during this ADA 20th anniversary celebration, to recommit your energy to ending the institutional bias during the next Congress.  The time is now to end the institutional bias and FREE OUR PEOPLE!

Sincerely,

The ADAPT Community

ADAPT, Around the country, System Change ADAPT, Add new tag

Information Bulletin #311 (5/10).

By Steve Gold

With the recent enactment of the 2010 Patient Protection and Affordable Care Act in March, there are a number of critical long-term services supports (LTSS) provisions that your States can implement that will dramatically improve community services opportunities.  States may not act if not pushed by advocates!!!  These new statutory provisions make the ADA and the Olmstead decision more powerful than at anytime since 1999.

Some background information: the Supreme Court in Olmstead rejected the States’ argument that Medicaid “reflected a Congressional policy preference for treatment in the institution over treatment in the community.” The Court also emphasized that “since 1981, Medicaid has provided funding for state-run home and community-based care through a waiver program.”

It was this existence and availability of Medicaid Waivers which moved the Court in Olmstead to hold that unnecessary institutionalization was discrimination under the ADA. Since then, Congress has offered States additional Medicaid opportunities to end discrimination. For example, States were offered Real System Choice Grants and Money Follows the Person Grants to reform their systems and get people out of institutions.

With the 2010 new health care reform statute, States will have many more Medicaid community-based program opportunities to end discrimination – IF they take advantage of these new LTSS opportunities and apply.

Four provisions of the 2010 Act will allow states to offer more home and community services. States will have no longer have excuses to continue their discriminatory funding practices. Advocates should work with your State to implement these LTSS opportunities. These programs become effective October 2011 or before, so advocates should begin now to make sure your State and your Medicaid officials take advantage of these provisions. Here they are:

1. Community First Choice Option (Section 2401).

For persons with disabilities regardless of age, who meet your State’s institutional level of need criteria (nursing home, ICF-MR, IMD) the Federal Medical Assistance Percentages (FMAP) - the federal reimbursement to your state for community-based attendant services and supports in the community - will be increased by six percent.

Since community-based attendant services and supports are the critical need to live in the community, your State will be able to focus on this service.

When this option is selected, these services will be mandatory and not a “waiver.” Cost caps, cost neutrality and waiting list restrictions are not part of this program. Therefore, States can provide community-based services and supports to persons with the most severe disabilities and receive enhanced federal funds. Transition costs from nursing homes and other institutions are also permissible and will receive the increased FMAP. These transition costs can now include first month’s rent and utilities, deposits, and household supplies.

2. Removal of Barriers to Providing Home and Community Based Services. (Section 2402).

This provisions broadens the scope of permissible Medicaid home and community-based services under the current optional State Plan1915 (i) program. For persons with disabilities regardless of age, who meet your State’s institutional level of need criteria and for whom services do not exceed the institutional costs, States can now include services which could not in the past be approved under section 1915 (i).

States cannot cap the number of people who receive these services but can target the benefits to people with specific conditions as well as based on functional need. Services must be provided statewide. They also raised financial eligibility from 150% of poverty to 300% of SSI.

Simply stated, the improved optional 1915 (i) when selected by your state will act as mandatory community services.

3. Money Follows the Person Rebalancing Demonstration. (Section 2403).

This provision extends the federal support for MFP from 2011 to 2016 by adding more than $2 billion to provide enhanced FMAP so that States which did not sign up for MFP in the past can now have the opportunity. One use of these funds is to reimburse states persons with disabilities regardless of age, whom your State moves from the institution to the community and their own homes and apartments. Also, Congress reduced the eligibility requirement that a person be in nursing home from 6 months to 90 days.

4. “Incentives for States to Offer Home and Community-Based Services as a Long-Term Care Alternative to Nursing Homes,” a Rebalancing Incentive Payment Program. (Section 10202).

This provision provides for enhanced FMAP from 2011 through 2015 for States that “rebalance” their long-term expenditures so that more Medicaid funds are expended on community-based services rather than to nursing homes and ICF-MR facilities.

For those most unbalanced States (i.e., States that spent less than 25% of Medicaid LTC funds in the community), their Federal Medical Assistance Percentages - the federal reimbursement - will be increased by five percent for increased services in the community until they reach at least 25% spending on community services.

States that spent between 25% and 50% of their Medicaid LTC in the community will receive an enhanced two percent increase in federal match until they reach at least 50% spending on community services.

States receiving this funding have till 2015 to reach these goals.

To receive this funding, states must make “structural changes” in their Medicaid program. States must develop a “single entry point” so that before a person goes into a nursing home they will be offered real community-based services; States must use a standardized assessment instrument to assess what services a person needs to stay in the community; and States must provide real case management services for eligible persons.

Congress appropriated $3 billion for these rebalancing. States must apply and submit a plan to HHS/CMS. All funds must be used for new or expanded home and community-based services.

DISABILITY AND ELDERLY ADVOCATES:

The 2010 health reform act presents many opportunities, however as you all are very aware, your States and Medicaid officials will implement these changes only if they are pushed by you.

Get to your Medicaid officials now. Make sure they know about and are planning to take advantage of these new provisions. If they do not take advantage, they will have no defenses against Olmstead lawsuits in the future. Congress has given them the tools to provide home and community services and to stop discriminating. We must work with the States to make them implement these opportunities. If they don’t - using Olmstead as a powerful advocacy and legal strategy is a resource we have.

DON’T MOURN ORGANIZE!

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.

ADAPT, Around the country, Independent Living, System Change Steve Gold

This past August 17, Dr. Sanjay Gupta, the chief medical correspondent for CNN, described the Community Choice Act as making hospitals accessible for wheelchairs. What has really angered activists that have worked since 1990 for this progressive idea to our Medicaid system is that Gupta, rather than being silent about what he knows nothing about, filled CNN air time with misinformation.

If you did have to give a sound byte on CCA, it would be “Medicaid reform to end the institutional bias.” It is almost more intriguing how Sanjay Gupta came up with his mischaracterization, but since August 17^th ADAPT has waited for a correction.

ADAPT assumes the reason CNN pays Dr. Gupta so much is because they expect him to clearly understand issues dealing with health care in the US. Last summer, when Americans were working diligently to understand the components of the health care reform bill Gupta’s comment to “make hospitals accessible for wheelchairs,” shows a clear lack of analysis in his specialty.

ADAPT has created a video basically asking Sanjay Gupta and CNN’s Vice President for Legal affairs, David Vigilante, to do their jobs. If American’s are to trust CNN and Gupta, they must recognize when their work has failed or analysis is poor. ADAPT is asking that on April 1^st, you call David Vigilante and ask him to keep his promise of an on-air correction. CNN will be on all day today, and on April Fools’ Day. Can you trust CNN?

ADAPT video (cc): http://www.adapt.org/freeourpeople/atlanta09/gupta/gupta10g.swf

David Vigilante

david.vigilante@turner.com

404-827-2600

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