By Steve Gold

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

Vote Button

Service centers will be available for the primary election, Boulder county is not using Polling Places for this election. Voters may conduct the following at a service center location:

• Vote in person on an ADA accessible voting machine or paper ballot
• Update voter registration information
• Receive a replacement ballot
• Drop off a voted ballot
• Unaffiliated voters can affiliate, receive a ballot and vote

Service Center Locations

BOULDER County Clerk & Recorder’s Office, 1750 33rd Street

* 8 a.m.-4:30 p.m., Monday-Friday, July 27-Aug. 6
* 9 a.m.-3 p.m., Saturday, Aug. 7
* 8 a.m.-5 p.m., Monday, Aug. 9
* 7 a.m.-7 p.m., Election Day, Aug. 10

LONGMONT County Clerk & Recorder’s Office, 529 Coffman Street

* 8 a.m.-4:30 p.m., Monday-Friday, July 27-Aug. 6
* 9 a.m.-3 p.m., Saturday, Aug. 7
* 8 a.m.-5 p.m., Monday, Aug. 9
* 7 a.m.-7 p.m., Election Day, Aug. 10

LONGMONT Twin Peaks Mall, 1250 South Hover Road (Northeast entrance, near Sears)

* 8 a.m.-4:30 p.m., Monday-Friday, Aug. 2-6
* 9 a.m.-3 p.m., Saturday, Aug. 7
* 8 a.m.-5 p.m., Monday, Aug. 9
* 7 a.m.-7 p.m., Election Day, Aug. 10

LAFAYETTE Lafayette Public Library, 775 West Baseline Road

* 8 a.m.-4:30 p.m., Monday-Friday, Aug. 2-6
* 9 a.m.-3 p.m., Saturday, Aug. 7
* 8 a.m.-5 p.m., Monday, Aug. 9
* 7 a.m.-7 p.m., Election Day, Aug. 10

Tim Wheat, photo by Tom Olin

Twenty years ago today the 1990 Americans with Disabilities Act, was signed by President Bush in the Rose Garden.  I have read and heard speeches about this anniversary; most people marking the day as a great step forward in civil rights, but cautiously adding that there is still a long way to go. I have a unique goal for this anniversary.

My hope for the 20 year celebration is not to hear the word “handicap” applied to our community today.

The ADA, now 20 years old, does not include the word “handicap” in any of the nearly 22,000 words of the act. There was an effort in the disability community to advance the term “people with disabilities” as the characterization of choice. Similarly, the term “handicapped” was demoted, but it is not clear if it is truly derogatory or simply a label that is not preferred. Conversely, the Fair Housing Amendments Act is packed with the word handicapped. It was passed two years before the ADA does not use the word “disability” even once in its almost 12 thousand words.

Ironically the Americans with Disabilities Amendments Act, which was passed by Congress in 2008 to rectify some of the courts understanding of the original concept of disability, uses the words “handicap” and “handicapped” each one time.

Hatred and disrespect are obvious when someone uses a derogatory term for a racial or ethnic group; however, the word “handicapped” does not seem to carry the same venom when aimed at our community. Likewise, people with disabilities often don’t react with malice when they are called handicapped. Many people with disabilities, agencies that work with people with disabilities and the disability community as a whole do not have a consistent reaction to “handicapped” as a demeaning term.

Text graphic ...we can expect to be called handicapped for years to come.

Most of the time people do not use the word in anger and so they project a passive reception for the listener. On the other hand, if a person means to humiliate a person with a disability; calling them handicapped does not seem to have much bite.

Slurs and racial insults are not purged from the language, but they don’t have the pseudo-government approval that the word “handicapped” does.  By pseudo-government approval I mostly point to the Fair Housing Amendments Act that uses the term extensively. It gives lawyers, journalists and our community the tacit approval to use “handicapped” to describe us. Although the ADA does not use the term, it also does not prohibit its use and the proliferation of “Handicapped Parking” signs implicitly creates that approval. For the upcoming national election, the state of Colorado has approved “Handicapped Access” for voter instructions. The state and federal accessible parking regulations do not use the word handicapped, however a significant number of businesses will purchase signs that will say: “Handicapped Parking.”

I know some people will think I have ruined my enjoyment of the 20th Anniversary by paying homage to political correctness rather than the civil rights at the root of the celebration. Of course it would be nice if no one used the word, but I feel that after twenty years our inability to define ourselves says more about the impact of the Americans with Disabilities Act that the employment rate, poverty and housing.  Until the disability community provides clear direction and leadership we can expect to be called handicapped for years to come.

Handicapped parking sign

Sisters and Brothers in the Disability Community:

Defending Our Freedom ADAPT logo

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.

Bruce Darling of ADAPT

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

The 2010 Primary Election will be Tuesday, August 10 and will be a mail ballot. There will be no polling places but people with disabilities that wish to use accessible voting equipment to cast their ballot privately and independently may visit one of the service centers. This link is to a list of designated service center locations: http://www.bouldercounty.org/clerk/elections/2010primaryservcent.htm

CPWD is working so that everyone has the ability to vote and we encourage you to get out on vote.  We have found that the best way to avoid problems on Election Day is to check and keep your voter information up to date.

If you live in Boulder County, you may check your voter registration information at the Boulder County Clerk’s website:

https://webpubapps.bouldercounty.org/Clerk/Voters/promptforname.aspx

Anyone in Colorado may check their voter registration information at the Sectary of State’s website:

https://www.sos.state.co.us/Voter/secuRegVoterIntro.do;jsessionid=00007wkCLB99K6yyL_QOUEC1Pat:121vl9gps

In the upcoming primary following are some quick facts:

• Mail-in ballots for the primary go out on July 19. Ballots cannot be forwarded by mail.
• Voters must be affiliated with a political party participating in the 2010 Primary Election to receive a ballot and vote. Only party-affiliated voters can participate in the Democratic, Republican and Libertarian party primaries.
• Unaffiliated voters can affiliate with a party until 7 p.m. on Election Day.