Tim Wheat and Henry Claypool

Today the US Department of Health and Human Services announced the reorganization of the Administration on Aging, Office on Disability and Administration on Developmental Disabilities into the Administration for Community Living.

Henry Claypool, a former staff member of the Center for People with Disabilities, gave a brief history of how HHS came to create the ACL. He said the US Supreme Court 1999 Olmstead ruling, the Real Choice Systems Grants, Money Follows the Person legislation in 2005 and the Obama Administration’s Year of Community Living were all forerunners of this consolidated federal agency.

Putting people in institutions is the way that federal programs served people with disabilities when Medicaid began. Today the remains of this institutional bias are still a significant part of our system and are the most costly part of Medicaid. Claypool tells a history of federal initiatives beginning with Olmstead that are working to reverse the institutional bias and provide Americans with choice in how we get Medicaid Long-Term Care Services.

Claypool said he will still advise on disability issues but he will focus on ACL and move the current policy office into the new agency. Kathy Greenlee, the Assistant Secretary for Aging will head the ACL while keeping some of her current duties with Claypool as chief deputy.

Following the announcement Claypool, Greenlee and Sharon Lewis of the Developmental Disabilities Administration took questions. Unfortunately, the first question was from an agent of the Voices of the Retarded who mischaracterized institutional incarceration as an Olmstead “choice.” The HHS staff did not cut the caller off, but all suggested they would continue to advocate for people who were institionalized.
Olmstead simply does not make the choice of an institution a Constitutional Right. The Supreme Court upheld the ADA concept that “inappropriate institutionalization is discrimination.” Although all states have Medicaid institutional programs that people may choose, it is our right as American citizens to live in our own homes and in our communities. We do not have a right to be institutionalized.

It was frustrating to hear the VOR misinformation on the national announcement call; but the creation of the ACL seems like a good move to end the segregation of people with disabilities and to end the institutional bias.

Tim Wheat
Community Organizer
CPWD

Rick Guidotti

The Conference on World Affairs is not an action related conference with policy-makers, officials and agents; but it is more of a contemplative conference that simply gives attendees the chance to think about issues. This year I was excited to see the topic “No Pity: The Evolution of Disability Pride,” as a CWA session on Wednesday.

Many people in the disability community are very familiar with committees, task forces, boards and work groups that aim to get things done but are short on action. It may be hard to attend a conference that professes contemplation over action. Like most people I cannot help but think that my local community needs to be more committed to action; and my state, the nation and the world to have more accomplishment and less pondering. As a matter of fact, I am a strong believer in the “do-it, fix it” philosophy over contemplative action, because I strongly feel that often our thinking about all aspects before we act can stagnate any action.

However, a topic like Disability Pride can use more thought. The CWA panel included Rick Guidotti, a fashion photographer, Henry Butler a musician and Michael Bérubé an author and professor. Cindy Donahue was the moderator. Overall, I was impressed the topic of disability pride made it on the program and I liked the perspectives of the panel.

Rick Guidotti told of his experience as a photographer in a foreign rural village where he was told that photography was taboo. Because of the warning, he believed he was just going to speak to the villagers about pride and images of disability; but before he could finish speaking, a mother held up her child and said: “Show the world the beauty of my son!”

Henry Butler noticed from his experience working with children at a music camp that everyone is a vehicle of creativity. He explained that pity was actually a reflection of how a person feels about themselves rather than a characteristic of the person being pitied.

Michael Bérubé

Michael Bérubé explained in his opening comments how the Disability Rights movement is largely unknown by the typical American. He compared our movement to the Gay Rights Movement and asked when there would be a chic television show called “Crip-Eye for the AB Guy;” in the same fashionable trendy style as “Queer-Eye for the Straight Guy.” His main point was that although Disability Pride was evident in some ways, there was still significant stigmatization of disability in the community.

In the discussion among the panelists they all developed the stigma as a theme that opposed the progress of Disability Pride. Humor was one method that society has for reducing stigma and Bérubé suggested that disability comedy would help to reduce social stigmas.

One question from the audience was about access for people who are deaf. The questioner pointed out that the CWA would cost her $500 a day for access with American Sign Language Interpreters. She also said that disability groups, many who are non-profits do not readily pay for access to their events.

The panel was united that the CWA should provide interpreters at all sessions. But they explained some of the limitations of the Americans with Disabilities Act. Michael Bérubé said that at the time, during the administration of George H.W. Bush, one aspect of the ADA to make it more bipartisan was the goal to “get people off government assistance.” This aspect has made paying for access problematic over the years and has left many people out including the Deaf.

Another obvious weakness of the ADA is that it was not followed by universal healthcare. This unbalanced governmental program draws a line between healthy workers and non-workers rather than providing ways for everyone to be involved in the workforce. Social Security defines disability as being unable to work, while the ADA defines disability functionally and requires reasonable accommodations.

Guidotti’s advice was to transition anger into advocacy and persistence. He said when you find yourself settling everyday you must be the one to tell yourself to stop compromising. “You stop and say: ‘I am not going to compromise.’”

The panelists used another question to deal with the r-word. Many in the disability community had opposed the movie Tropic Thunder because of the use of the r-word in a satirical format. Bérubé made the case that the movie had worked with the NAACP to assure that the African-American community would not reject a white actor in blackface. But for the disability community the joke was not good and the satire was not clear.

“Retarded is back in vogue, the Black Eyed Peas big hit ‘Let’s Get It Started;’ was originally titled ‘Let’s Get Retarded,’” Michael Bérubé, a professor at Penn State said. “While ‘retarded’ can be fashionable, the word ‘retard’ is personal.”

There were also topics at the CWA on PTSD, Alzheimers and Dementia that related to disability; but I did not have a chance to attend those conversations. I attended sessions on healthcare, social media, homelessness and addiction that can relate to disability and I like the chance to consider the many ideas on these topics.

But as I return to meetings and work-groups that get together to get things done, I hope that everybody I work with will take time to think about the “big picture” of what we are ultimately trying to do. I hope that our determining the best course of action to take will not lead to an endless loop of contemplation, but we will balance the thought with thoughtful action to really make a difference for people with disabilities in our community.

Tim Wheat
Community Organizer
CPWD

Passive Enrollment discussed at CPWD

Teri Bolinger of HCPF

CPWD held a Medicaid forum to hear directly from the state of Colorado about the Medicaid and Medicare Dual Eligibility Demonstration. The state is looking for ways to cut costs around this group of beneficiaries because they see the cost to the state as disproportionately high.

The most controversial point of the dual eligibility demonstration was the proposal to “passively enroll” people into the program. A letter would be sent to dual eligible beneficiaries that they must act on or they will be enrolled in the program. A beneficiary must actively respond to the letter to “opt-out” and keep services untouched.

Ian Engle, the CPWD Executive Director, pointed out the contradiction of passive enrollment with the Independent Living philosophy. He said that the Center promotes an informed individual to actively chose and direct their care. CPWD works so people decide and select services and supports so that they may take ownership and responsibility for the decisions they make.

Passive enrollment happens regardless of a choice and often without either clear knowledge or desire. An individual is forced to respond in order to opt-out of the program. Typically knowledgeable people act in their self-interest and those that do not act miss-out on the benefit. However, the state looks to turn this around so that the uninformed will be enrolled.

The state contends that someone may choose to opt-in or opt-out to the program at anytime and to be consistent with the current Colorado legislation they believe that passive enrollment is the only way to currently proceed. Teri Bolinger from the Colorado Health Care Policy and Finance Department was clear that passive enrollment was the only method on the table. Colorado citizens would have to demand a change for the state to consider another form of enrollment.

We asked the state to make the case why an individual would want to opt-into the program, but they could only repeat the advantages to the government agencies and providers. They implied that people would benefit from a more centralized control of programs and services and it is easy to see how this would benefit the state and possibly save money; but from the perspective of an individual recipient, there is no advantage.

I believe it is reasonable to opt-out until the state can show that their demonstration will actually work for you. It is essential that even creating an efficient and effective system that those impacted are informed and understand the services provided by the state.

People at CPWD Medicaid Forum

By Howard Levett

CPWD Independent Living Advisor

Howard Levett

Since I have some personal experience, I’d like to address the article Sheltered workshops offer little benefit, studies find by Michelle Diament in Disability Scoop. (http://www.disabilityscoop.com)

I find interesting, the article’s opening paragraph, “Sheltered workshops are significantly more costly, yet no more effective than supported, competitive employment at ensuring job prospects for individuals with disabilities, new research suggests.”

I would add that yes, this paragraph is probably true. But perhaps the best explained reason for the first paragraph is the last paragraph that says, “Other factors like the severity of an individual’s behavior challenges might also play a role.” If you thought that everyone with a disability was alike and therefore trainable, perhaps you need to rethink this. As with any other group in society, we don’t all function at the same level and never will.

Most consumers partaking of these types of services have an interest in feeling like they are contributing, learning new skills and making money. The hard truth is that not everyone is suited for competitive employment with the same level of success. So, the more skilled worker, after learning in this environment, moves on to the competitive job market.

Those less able and less skilled and those that present challenging behaviors not suitable for the competitive market are left behind in the sheltered workshop….to earn less money at a higher cost. This should not be surprising to anyone. It’s the nature of the beast that those that aren’t able to progress or that have challenging behaviors are going to cost more money. They do in most any situation.

Howard Levett

Those folks left behind in the sheltered workshop environment however are still able to feel that sense of accomplishment, the pride in earning money and learning new skills. Certainly something any of us would take pride in. Is this a bad thing? Of course not. The crime here is that work contracts are paid at below minimum wage when extra supervision and training are demanded. Not very smart when you know up front that non-disabled people working in a factory setting are going to be paid at least minimum wage with the need for less supervision.

My message is this; don’t kill off a program because perhaps it’s not paying for itself; don’t deprive those not able to work in the competitive job market with the opportunity to learn and feel the pride in putting in a day’s work and earning a paycheck.

Howard Levett
Center for People with Disabilities
10351 Grant St. Unit 1Thornton, Co 80229
(voice) 303-790-1390
(fax) 303-792-0317

By Susan Spaulding and Diane Groff

Diane Groff

In light of your front-page story of Feb. 18 regarding a renter’s legal right to keep a service animal or a companion animal, even in a rental unit that does not allow pets, we hope this short summary is helpful for your readers.

Three federal laws give people the right to request assistance from an animal: the Americans with Disabilities Act, the Fair Housing Act and Section 504 of the Rehabilitation Act. These laws describe two types of assistance animals: service animals and companion animals. A person is entitled to the aid of an assistance animal after following a specific process for requesting a reasonable accommodation.

Places of public accommodation and housing have different standards for enforcement of disability law pertaining to assistance animals. The bottom line, however, is that the law requires places of public accommodation to allow patrons the use of service animals on their premises, and the law requires housing providers to allow tenants the use of both service and companion animals.

A person requesting an accommodation for their service or companion animal has to provide information on how assistance from that animal directly provides service or companionship relating to the person’s disability needs. Requests for accommodation should be made in writing, if possible.

A landlord also has rights. The landlord has the right to know if the tenant meets the definition of disabled as described under the Fair Housing laws, and if the accommodation necessary and reasonable. Also, importantly, a housing provider does not need to know the nature of the disability, but only the substantial limitation that the disability presents for the individual.

Service Dog relaxing in the shade

There are at least two excellent resources in the city of Longmont for assistance in understanding and navigating the process: the city of Longmont’s Community and Neighborhood Resources, at 303-651-8444, and the Center for People with Disabilities, Longmont office, at 303-772-3250. Feel free to contact either resource if you have any questions.

Further, the city sponsors the Longmont Landlord Training Alliance, a free training held every second Wednesday of the month at the Senior Center. The Landlord Training Alliance will hold a Fair Housing training at its July meeting, July 11, with attorney Phyllis Roestenberg.

Susan Spaulding is a community relations specialist with the city of Longmont. Diane Groff is the manager of the Longmont office of the Center for People with Disabilities.