Poem for a Lucky cat

Lucky and Grandpa

My 15-year-old cat Lucky had to be put to sleep today. She was a fine old cat and a constant, if needy, friend. This is an ancient Irish poem written by a 9th century Irish monk about his cat. Lucky was just like Pangur Ban except Lucky was a "she" and not a "he", she was not Irish although she had the luck of the Irish, and she did not chase mice but had a preference for chipmunks. I am not a monk and I am too tired to sit all night hunting words. But I like the poem, especially the line "In our arts we find our bliss, I have mine, and he has his."

Pangur Ban

I and Pangur Ban, my cat,
'Tis a like task we are at;
Hunting mice is his delight,
Hunting words I sit all night.

Better far than praise of men
'Tis to sit with book and pen;
Pangur bears me no ill will;
He, too, plies his simple skill.

'Tis a merry thing to see
At our task how glad are we,
When at home we sit and find
Entertainment to our mind.

Oftentimes a mouse will stray
Into the hero Pangur's way;
Oftentimes my keen thought set
Takes a meaning in its net.

'Gainst the wall he sets his eye
Full and fierce and sharp and sly;
'Gainst the wall of knowledge I
All my little wisdom try.

When a mouse darts from its den.
O how glad is Pangur then!
O what gladness do I prove
When I solve the doubts I love!

So in peace our tasks we ply,
Pangur Ban, my cat and I;
In our arts we find our bliss,
I have mine, and he has his.

Practice every day has made
Pangur perfect in his trade ;
I get wisdom day and night,
Turning Darkness into light.'

Lucy the dog and Lucky the cat: BFFs

Steep cuts to Detroit area mental health budgets

This if from the DDadvocates Newsletter, November 2013, by Ed Diegel:

Welcome the Detroit Wayne County Mental Health Authority 

Lobby Against unprecedented Cuts to Mental Health Budgets in the Tri County Area

We have been slow to acknowledge the new Detroit Wayne County Mental Health Authority and to welcome its new leader, Tom Watkins. We should all do this as birth of the new Authority represents a first step away from complaints of bad politics and county mismanagement of the old Detroit Wayne County Mental Health Agency.

The new organization is barely on board and the State has announced steep cuts to the Wayne, Macomb and Oakland Mental Health Budgets for the 2014 Fiscal Year which began October 1, 2013.

For Wayne County the cuts are $15.0 million. So much for the State commitment to one of the most impoverished areas in the country. Macomb and Oakland cuts will be 11% and 7% respectively. The cuts effective October 1, 2013 were not announced until September 27, 2013! This timing comes from an administration that wants to run the state like a business. No successful business does such poor planning that it announces policy shifts and budget
actions of this magnitude 3 days before a budget cycle. The rationale for the cuts is that Wayne, Oakland and Macomb receive a disproportionate share of the state’s Medicaid dollars and therefore these reductions followed by incremental 5% reductions each year over time were put in place. There is no attempt here to measure the disproportionate concentration or severity of persons served, or differences in cost of living or other factors that a reasonable party might use. Furthermore according to one analysis, there is within the plan also disproportionate reduction of funding for persons with Developmental Disabilities.

To my knowledge, this is not a legislative action—the State Department of Mental Health led by Mr. James Haveman is responsible for this action. Furthermore, it is of such significant importance that the Directors of Mental Health in the three counties sent a joint letter of protest to Lansing—hopefully this is a sign of a new era of cooperation flowing from the new Authority.

What to do?

Please do this today—

1. Go to the new DWMHA web site  Go to the Contact Us page and send a message to Tom Watkins welcoming him and encouraging him and his staff in the new organization. Take the time to mention any gaps or unmet needs you are aware of in
   service delivery to persons with developmental disabilities.
2. Go to the DWMHA Home Page and find the link to your legislators
3. Use the link to send a note to your Representative and your Senator and inform them that the so-called Mental Health rebasing action will further dismantle services in the most needy counties of the state, is ill conceived and will create yet further economic burden in the tri county area. 
4.  Ask each of them to tell you what they will do to intercede. Don’t assume your legislator will support you in this. Remember, most Wayne County legislators voted AGAINST the creation on the newAuthority!

Thanks, and Happy Thanksgiving to each of you!!
 
Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddADVOCATES.com

Ann Arbor paper recognizes a local hero

This is from Ann Arbor Family, a free local advertising paper that features stories about people and events in the Ann Arbor area. Stephanie is one of my own personal local heroes from Just Us Club, a non-profit organization that provides after school care, an adult activity program, and respite care  for  children and adults with moderate to severe disabilities.

 Special needs Helping Heroes by Nan Bauer:

Stephanie Swain 
Program Director for the Just Us Club

Coming from an Ypsilanti family of 11 kids, Stephanie Swain realized early on that she had a heart for childcare. A Special Ed teacher by day at the High Point School in Ann Arbor, Stephanie’s the program director for the Just Us Club, an after school option open to any students with disabilities who can function in a group setting. “We have a huge range of kids here: cerebral palsy, muscular dystrophy, Down syndrome, autism spectrum,” she says. “We have a pretty unstructured program, because the kids want to relax after a day at school, so we play games, do art, and we have music therapy once a week.” She also offers respite care, giving parents some precious free time while she hangs out with the kids. Even with her jam-packed schedule, she’s found time to continue her education and is on the verge of receiving her master’s degree and gearing up for a PhD. “I’m super passionate about helping parents understand their kids’ behaviors,” she says. “If I can help alleviate some of the anxiety that parents can feel when their child has a meltdown or just acts up in an extreme way, the environment gets better for the whole family.”

Learn more about the  Just Us Club at justusclub.org/contacts.html

More housing projects for people with autism and other disabilities

"The Architecture for Autism" by Michael Tortorello is an article from the New York Times, 10/9/13, about new parent-initiated housing projects for people with autism.
 
An new template for building housing and communities for people with autism was developed in 2009 by Kim Steele and Sherry Ahrentzen who collaborated on “Advancing Full Spectrum Housing,” a comprehensive design guideline for housing adults with autism.
 
According to the article,  "Perhaps the first development to closely follow their template is Sweetwater Spectrum, a residence for 16 adults whose abilities and disabilities span the full range of autism. The innovative $10.4 million project opened in January in the heart of California wine country, and its founding families and board hope to make Sweetwater a model for like-minded experiments across the country."

"…Sweetwater’s mission statement lays out some ambitious principles. Residents will be able to age in place. The community should 'accommodate a broad financial spectrum,' subsidizing residency for a quarter of its tenants. And attendants (who are not Sweetwater employees) should be offered incentives to encourage stable, long-term care relationships."

Here are some of the details about how houses are designed and equipped to accommodate people with autism:

• "'..there is a floor drain in every bathroom. As Ms. Maytum explained, 'Water can be a really interesting activity for people with autism.
• "Safety and security were other concerns. The kitchens use induction cooktops to limit the possibility of burns. And while the perimeter fence is slotted ..., solid planks span the bottom few feet. Residents are free to walk out the front gate, but it’s probably best that they not treat the fence like a ladder. 
• "A bigger design challenge was to see a house through the eyes of an autistic client. For example, the layout of all four dwellings is identical: a neighbor’s place should feel like home. And multiple seating options encourage an individual to be near the action without necessarily plunging into the fray.
• "Another way of limiting noise annoyance was to place pairs of bedrooms on opposite sides of the house, instead of in a dormitory-style row…

This, like other planned housing for people with disabilities, is an open-ended experiment. Cost is one barrier to making it available to a large number of people. "…families pay $39,000 a year for a child to live at Sweetwater. That expense, said Ms. Steele, the researcher, 'will preclude people who don’t have a trust fund or wealthy parents from living there.'" Sweetwater does, however, provide scholarships for a number of residents.

Another housing project is Airmount Woods in Bergen County, New Jersey.  Airmount Woods is "a new eight-unit residence developed by Bergen County’s United Way and operated by the service agency New Horizons in Autism."

"The twin four-bedroom houses will use some of the latest concepts in building for autism. But the real innovation may be the way it promotes special-needs housing as a community asset. That term is not just a stock phrase. Airmount Woods belongs to a nonprofit group called Ramsey Housing Inc., formed by the Borough of Ramsey. The mayor, Christopher Botta, sits on the board, and he dropped by on a recent morning to show off the project. Almost every one of his constituents knows someone with autism, the second-term Republican mayor said. This isn’t housing for strangers."

Here are two innovative housing projects for people with developmental disabilities in Michigan: Benjamin's Hope and Harbor House Ministries. 

LTO Ventures, is a non-profit organization with information about housing and planned communities for people with autism around the country.

HUD: Housing for hearing-impaired has too many deaf residents

"It's nice to have a life that's equivalent to other people that are not deaf," said resident Linda Russell. "This building is designed for deaf people, by deaf people, and we know what is best for our needs. And people that don't understand our needs, should not be putting themselves in decision-making positions for us." Resident of Apache ASL Trails senior housing project.

According to a report from FoxNews.com, 10/21/13, "Feds try to eliminate housing for the deaf -- at complex built for hearing-impaired", the federal Department of Housing and Urban Development (HUD) is telling Apache ASL Trails in Arizona, a housing project for deaf seniors, that they are discriminating against the non-deaf.

A memo from HUD on the housing project says, "A preference or priority based on a particular diagnosis or disability and excluding others with different disabilities is explicitly prohibited by HUD's Section 504 regulations…There is no legal authority contained in any of Apache Trails funding to permit such a priority or preference." 

Even though HUD approved the apartment building project in 2008 and helped fund it,  HUD is now "…threatening to pull all federal housing aid to Arizona unless it limits the number of hearing-impaired residents to 18 people." 

According to the report, "All 74 units at Apache ASL Trails accommodate wheelchairs. Blinking lights signal when the doorbell rings and when utilities like the garbage disposal and air conditioning are running. A video phone lets residents 'talk' with friends." Ninety-percent of the units are currently occupied by deaf and deaf-blind seniors, but HUD wants to impose a quota of only 25% hearing-impaired residents.

The dispute over the Apache senior housing project is a continuation of HUD complaints covered in an article on April 28, 2013 in the New York Times:  "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination". 

One rationale used by HUD in claiming discrimination by the Arizona housing project is Section 504 of the Rehabilitation Act .

According to the HUD website on people with disabilities:
 
"Section 504 of the Rehabilitation Act of 1973 states: No otherwise qualified individual with a disability in the United States. . .shall, solely by reason of her or his disability, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program, service or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. (29 U.S.C. 794). This means that Section 504 prohibits discrimination on the basis of disability in any program or activity that receives financial assistance from any federal agency, including the U.S. Department of Housing and Urban Development (HUD) as well as in programs conducted by federal agencies including HUD."

On the website explaining the jurisdiction of HUD in answering complaints of housing discrimination there is an example of when a specific disability may be an eligibility requirement of participation in a program:

"HUD considers several factors in determining if it has jurisdiction to investigate the complaint. … the Department must determine whether the individual, or the person the individual represents, is a person with a disability as defined by Section 504. The Department also must determine if the individual is "otherwise qualified" for the program or activity alleged to have discriminated. …In some cases, disability may also be an eligibility factor. For example, if a housing program is set up under the Department's Housing Opportunities for Persons with AIDS (HOPWA) program, and the complainant's only disability is a visual impairment, the person would not be qualified for the HOPWA project because that project is designed to meet the needs of persons with AIDS. [emphasis added] Therefore, HUD would lack jurisdiction to process this complaint under Section 504."

Under some circumstances, a specific disability is a criteria for eligibility for a federally funded program and people with other disabilities may be excluded. 

Other ironies abound: This is a senior housing project, but apparently there is no charge that younger people are being discriminated against. Although 90% of the residents at Apache are hearing-impaired, 10% are not, . How can the claim be made that non-deaf people are excluded? No actual person has claimed that they have been discriminated against by the project. It appears that only HUD has gone through the mental contortions necessary to justify a charge that actual discrimination is occurring at Apache ASL Trails housing project.

What's next? Hospitals discriminate against the non-sick? Jails discriminate against non-criminals? High Schools discriminate against 5-year-olds? Soccer leagues discriminate against the soccer-impaired?

Wyoming : Working together better than circling the wagons

..not circling the wagons

This editorial is from the Caspar Wyoming Tribune and appeared in the VOR Weekly News Update for September 27, 2013   

It also appeared in the Lander Journal (“Working Together,” 9/25/2013), the Gillette News Record (“Wyo. needs to do more for developmentally disabled,” 9/25/2013) and the Wyoming Tribune Eagle (“Families of the disabled must carry their torch,” September 20, 2013)

Connie Howard is VOR’s Wyoming State Coordinator. Connie’s son, Mark, has profound intellectual disabilities and has received high quality, specialized supports in both facility-based and community-based settings.  

*****************************************************

We must work together, not apart 
by Connie Howard
 
September 21, 2013 
Casper Star Tribune
Casper, Wyoming 

I have been advocating for people with developmental disabilities for 53 years. By no coincidence, that’s also how old my son is.

Mark is developmentally disabled. While young, I never said “I want to be an advocate for people with disabilities when I grow up.” Like so many other families of individuals with developmental disabilities who daily advocate for their loved ones, my son has brought out the advocate in me.

While my advocacy is certainly motivated by my son and his needs, I also recognize that he is part of something much bigger. Mark is part of a population of developmentally disabled adults who are served by a complex web of state and federal programs all designed to ensure that he and his peers are adequately and safety served in settings of their choice. 

Calling on the general public to support the least-abled among us is the greatest moral test of our government and its people, as noted so aptly by Hubert Humphrey.

The compassion of the general public in helping to provide my son and his peers the supports they need is not lost on me. I recognize that what Mark receives is a blessing, not an entitlement.

But, the system is not perfect and that motivates me too.
 
The system allows aging parents to continue caring for their middle-aged loved ones with developmental disabilities long beyond what is reasonable. The system allows 600 Wyomingites in desperate need of services to wait. Worst of all, because it can hinder (or stop) progress, legislative debates about the system’s future encourage infighting among advocates for people with disabilities.

Recent proposals suggest that Wyoming’s main Medicaid programs for people with disabilities – the Wyoming Life Resource Center and community-based programs—must be cut (translation: individuals will lose services) to provide funding for people waiting for services.

Don’t get me wrong. People in need should not have to wait another day. But, how is “robbing Peter to pay Paul” a solution?

Yet, even as every advocate sees the injustice of depriving one segment of the population to meet the needs of another, it still takes a collective resolve to avoid “circling the wagons” in support our own programs.

On Sept. 26, Gov. Matt Mead, like many state officials and legislators before him, will visit the Wyoming Life Resource Center. I am encouraged by these visits. Too often, elected officials make policy “sight unseen.” Mead will see firsthand the wonderful care my son and his peers receive. He’ll see profound needs being served so compassionately.

If given the chance, I will use this opportunity to encourage the governor’s support for a broad continuum of supports, services, residential, and employment options that match the broad spectrum of abilities, needs and preferences within the disabled population. I vow not to “circle the Wyoming Life Resource Center wagon.” My support for WLRC will be clear but not exclusive. A continuum of service options is needed.

I will also continue my advocacy in Cheyenne, attending rallies in support of expanded community-based programs, while also speaking in support of the great need filled by WLRC.

I will also encourage many more fellow advocates to do the same. As Pastor Rodger McDaniel wrote in his blog, “The developmentally disabled, their families and advocates should flood the Capitol building. They should occupy the rotunda of the building, filling it with the faces of the people who will suffer the impact of the choice the Legislature made.”
 
Families of Wyomingites with developmental disabilities must carry the torch for our loved ones, and we must do all we can to carry this torch hand-in-hand. 

For if not us, then who?

The ARC Michigan to the State : Stop funding congregate settings

...sentenced to a bucolic lifestyle

The ARC Michigan is at it again, demanding that the state discontinue Medicaid funding for people with developmental disabilities participating in programs that don't meet the ARC's approval. This time around, The ARC MI, a state advocacy organization for people with DD, is backed up by five other advocacy groups whose executive directors co-signed a letter to James Haveman, the director of the  Michigan Department of Community Health (MDCH). Despite the backing of the Autism Society of Michigan, the Epilepsy Foundation of Michigan, the Michigan Disability Rights Coalition, United Cerebral Palsy of Michigan, and Michigan Protection and Advocacy Service, the ARC is still not persuasive in arguing that people with DD  are being discriminated against when they choose to participate in specialized programs designed for people with disabilities.

The complaint by these advocates appears to be based on the misconception that any congregate setting (a setting that serves more than two or three people with disabilities in a group to provide specialized services or residential options) is by definition discriminatory. They claim that this comes from the Americans with Disabilities Act (ADA) and the 1999 U.S. Supreme Court Olmstead decision, but this is easily disproved. This misreading or misinterpretation of the law makes one wonder if the executive directors of these influential organizations have ever read the ADA or Olmstead. Their misconception, however, is  prevalent among many government-funded advocacy groups and is even being used by state and federal governments as an excuse to eliminate specialized services and programs for people with DD. Who knows whether the advocates have deliberately misinterpreted the law, or whether they have come to believe their own misconceptions after hearing them repeated over and over again.

The project that is receiving the most attention from these groups at the moment is Benjamin's Hope, a non-profit in Holland, Michigan. This is a newly opened parent-initiated project that will eventually house 24 people with autism and other developmental disabilities in custom-designed homes. A 40-acre campus will provide recreation, meaningful employment, and other programs for both residents and the larger Holland and Ottawa County communities. It is a public/private model, that uses public funds for direct care. Medicaid "Home and Community Based Services" funds pay for direct services for participants but specifically do not pay for housing, food, or other basic supports. (HCBS funding is generally available for eligible DD adults regardless of where they live.)

The advocates shrilly contend that the existence of projects such as Benjamin's Hope reverses policies "in the direction of integration and inclusion…" They find them "unwarranted and frightening", calling the "demand" for public dollars "a form of blackmail...They are saying we will decide where and ho[w] people, including our children, with developmental disabilities will be served well past our life time. They will be isolated, segregated and served in institution-like situations, albeit a private one, using public dollars."

"…should Medicaid/CMS [the federal Centers for Medicare and Medicaid Services] end up permitting funding, generations of persons with developmental disabilities will be sentenced to occupy isolated settings separate from real community and the rest of us, even if at some artificial point community contact is attempted." [click here for more on the controversy over proposed CMS rules.]

Blackmail? Isolation and segregation? Institution-like situations? That's strong language for these organizations to use, especially considering that their letter offers no evidence to support any of these accusations. I know of no individuals living at Benjamin's Hope, for instance, who had to blackmail their local Community Mental Health agency to receive funding. It is safe to assume that people involved in the project were funded only after a careful process of individual evaluation, person-centered planning, and the weighing of possible alternatives. Their families most likely did a great deal of soul-searching before they made the momentous decision to place the care of their loved-ones in the hands of others.

Just how isolated and segregated are the people living at Benjamin's Hope? Within two weeks after the ARC Michigan letter was written and signed, Benjamin's Hope held its grand opening,"the Firelight Festival of Hope", that included not only the people directly involved in the project, but hundreds of people from the community enthusiastically showing their support.  In addition, State Senator Arlen Meekhof and state Representative Amanda Price presented a tribute honoring the non-profit, signed by Lt. Governor Brian Calley whose daughter has autism. The success of Benjamin's Hope is strongly  linked to the fact that it is engaged with and supported by its surrounding community.

Furthermore, as far as I am aware, no one involved in Benjamin's Hope or any other family-initiated and community-supported project ever suggested that they intend to impose their model of community living on any individuals who do not want it. This is in sharp contrast to the approach taken by the professional advocacy organizations.

Perhaps the ARC and the co-signers of the letter to the State would not have found projects such as Benjamin's Hope so "frightening" if they had ever bothered to talk to the people involved or to their families. None of the executive directors who signed the letter bothered even to contact the director of Benjamin's Hope.

Could there be a more obvious display of the arrogance of advocates who are so sure that they know what is best for everyone that they never have to contemplate the harm they may be doing to the people they claim to represent?

********************************

Links to documents:

Letter to CMS from Dohn Hoyle, the ARC MI Executive Director, 8/13/13
Letter to CMS from U.S. Representative Huizenga supporting Benjamin's Hope
Letter to MDCH from The ARC MI and other advocacy groups 9/3/13

The ADA, Olmstead, and Choice: 

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.
 
Olmstead Resources
1999 U.S. Supreme Court Olmstead Decision
Olmstead Presentation by Bill Burke
What Olmstead is Not