Schoolgirl Signs Christmas Songs for Deaf Parents

Kansas poised to turn over DD services to for-profit health plans

This is from an article in Kaiser Health News posted on 12/5/13 called  "In Kansas, A Fight Over Developmentally Disabled Shifting To Medicaid Managed Care" by Jenni Bergal. According to the article, Kansas is poised to hand over all home and community-based services for 8,500 people with developmental disabilities to three for-profit Medicaid managed health plans on January 1, 2014:

"…What concerns families and advocates the most is that the three for-profit national insurance companies that run KanCare [the program through which the State of Kansas administers Medicaid] will be responsible for a statewide program that they’ve never managed in Kansas or elsewhere. They’re also worried that the need to make a profit ultimately will destroy a system families and advocates think works well.

"While Kansas will become the first state to make such a leap, it is being watched closely elsewhere, as at least two other states – Louisiana and New Hampshire – are considering moving in the same direction.

“'This is an unprecedented model. No state has ever taken a developmental disability population and placed it in an arrangement like this, with an out-of-state managed care system, all at once,' said Rocky Nichols, executive director of the Disability Rights Center of Kansas, a legal advocacy group. 'It’s almost like throwing everyone into the deep end of the pool.'"
 
Families believe the current system is working well and wonder why the state would take such risks with their DD family members:

"In Kansas, where a network of community-based nonprofit organizations and county agencies oversee these services, individuals can choose a case manager, who visits them at home and coordinates their care. In some cases, those relationships go back decades. While these organizations will continue to determine what services clients are eligible for and case managers will work with families to arrange that care, ultimately the health plans will be responsible.

“'There is a great deal of fear in the community that these big private health plans don’t know much about this population,' said Maureen Fitzgerald, disability rights director for The Arc, a national advocacy organization for the developmentally disabled. 'These are such vulnerable people. Mistakes that are just inconvenient to some can be devastating to them. If the home care person doesn’t show up, you could be lying in your bed all day. It’s kind of scary.'

"Only a handful of states, including Michigan and Vermont, have moved the developmentally disabled into managed care for long-term services. They’ve mostly relied on existing networks of community-based nonprofits or county agencies or have made themselves the managed care organization. None has turned exclusively to national managed care companies."

The health plans currently manage the medical care for people with developmental disabilities, but not the non-medical care and social services that so many rely on.

The article continues:

"[Governor] Brownback, a Republican, has said that KanCare will improve care coordination and reduce growth in Medicaid spending for the state and federal government by $1 billion over five years.

"Although the frail elderly, physically disabled and mentally ill are now getting long-term services through KanCare, inclusion of the developmentally disabled was delayed until 2014 by the legislature following bitter protests from parents, advocates and providers. Lawmakers wouldn’t yield again, even as more than 1,000 people rallied outside the Capitol in Topeka in May, many wearing red T-shirts that read: 'Not Worth the Gamble.'"

The state says that nervous providers have gotten families unnecessarily riled up about the plan, and has assured them that services won't be cut. 

"…But many are skeptical. They fear that the managed care companies will seek to boost profits by reducing services or driving some small providers out of business because of payment delays or denials. The companies say these concerns are unfounded and insist that services will be maintained and providers paid promptly."

This is certainly a situation that warrants watching. Kansas is going to turn over the management of home and community-based services for people with developmental disabilities to for-profit health plans that have no experience serving this population but are very good at making money. What could possibly go wrong?

Kaiser Health News (KHN) is a nonprofit news organization committed to in-depth coverage of health care policy and politics.

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?