Sunday, August 10, 2014

Talking points for protecting DD individual housing choices

These talking points are found on the website of the Wisconsin Council for the Deaf and Hard of Hearing. They are in defense of a senior housing project in Arizona called Apache ASL Trails, a project specially designed for seniors who are deaf and use American Sign Language to communicate. The housing project received a complaint from the U.S. Department of  Housing and Urban Development (HUD) that they were discriminating against people who were not deaf and therefore in violation of HUD anti-discrimination policies. HUD finally backed down and withdrew its complaint.

This case parallels in many ways the plight of people with disabilities who live in or wish to live in congregate housing and planned communities that are freely chosen by the individuals or their  legal guardians, and meet the unique needs of the people living in these settings.

Many federally-funded advocacy organizations and the Centers for Medicare and Medicaid Services have insisted that funding through Medicaid waivers and state plan services to people with developmental and other disabilities may be restricted if the settings in which people live are too "institutional" and not  "community" enough as defined by the CMS. [CMS is the federal agency that regulates Medicare and Medicaid.] Influential advocacy groups and the National Council on Disability have gone as far as defining as "institutional" any setting where more than 3 people with disabilities live or receive services together.

Final rules issued by the CMS on Home and Community Based services and settings in January 2014 were modified from earlier versions to answer criticisms from many groups [See the Community Choice Coalition] and individuals who believe that there are many ways of living in a community. Congregate settings are not inherently discriminatory and do not violate the often misinterpreted 1999 Supreme Court Olmstead decision .

Even facilities that are explicitly defined as institutions (Intermediate Care Facilities for people with Intellectual and Developmental Disabilities,  nursing homes, mental hospitals, and other hospital settings) were not considered inherently discriminatory by the Supreme Court in the Olmstead decision when they are  necessary for people who cannot successfully live in community settings. Individuals may not be removed from institutional care to community care if they do not agree to it. 

The legal underpinning for the talking points on Apache ASL Trails is section 504 of the Rehabilitation Act of 1973: 

"No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any  program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency. . ."  29 U.S.C. 794 


HUD rules regarding housing discrimination do not justify disqualifying projects such as Apache ASL Trails:
  • 24 C.F.R. 8.4(b)(1)(iv) allows recipients of Federal funds to provide different or separate housing to individuals with handicaps, or to any class of individuals with handicaps, if such action is necessary to provide qualified individuals with handicaps with housing that is as effective as the housing that is provided to others. 
  • 24 C.F.R. 8.27 requires that accessible units be marketed to individuals who need the accessibility features of the units, and that the accessible units first be offered to individuals who need the accessibility features of the unit. 
  • 24 C.F.R. 8.22(c) allows HUD to approve a higher percentage of accessible units than the minimum percentages required by the regulations. This approval can be based on any available current data or evidence of a need for a higher percentage, and the regulations do not prohibit a property from making all of its units accessible to individuals with hearing or vision impairments.
According to the Talking Points:
  • HUD’s insistence upon an arbitrary 25% limit on the number of accessible units that can be rented to people with disabilities who need the accessible features has no basis in Section 504 or its implementing regulations and would in fact be a violation of 24 C.F.R. 8.27. 
  • Any quota, by definition, violates 24 C.F.R. 8.27 and discriminates against individuals with disabilities. The protections of federal disability rights laws are not first come, first served.
CMS and other federal agencies are also subject to Section 504 anti-discrimination rules, regardless of an agency's attempts to use anti-discrimination law to limit access to benefits and housing choices that the agencies and many advocacy groups would like to eliminate.

Saturday, August 9, 2014

Kentucky: Specialty medical clinic for people with DD

Wild Turkey
From the VOR weekly news update, August 8, 2014

Kentucky: A new wave of progress in healthcare is coming
This is from Exceptional Parent Magazine * August 2013 * by Matt Holder, MD, MBA, Chief Executive Officer of the Lee Specialty Clinic and the President of the Academy of Developmental Medicine and Dentistry

Excerpts

  On June 11, 2014, Governor Steven L. Beshear presided over the ribbon cutting ceremony for the Lee Specialty Clinic in Louisville, Kentucky.  While this ceremony celebrated the opening of just one clinic in one city in the United States, this single event marks one of the most significant developments in healthcare for individuals with intellectual and developmental disabilities in decades.

   The Lee Specialty Clinic focuses exclusively on people with intellectual and developmental disabilities. Its core services include primary care medical services, specialty medical services, dental services, psychiatric and behavioral services, physical therapy, occupational therapy, speech therapy, and crisis intervention services. These services are provided in an interdisciplinary fashion, whereby the professionals who provide them communicate with each other for the benefit of the patient. The Lee Specialty Clinic also serves as a teaching and research program where students from any healthcare discipline can learn, intensively, how to care for people with I/DD. Finally, and perhaps most important of all, the clinic model is reproducible. Its funding model has been approved at the federal level and its coordinated through the Medicaid system. This means that any state that desires to create such a model can do so.

YEARS OF COLLABORATION

    The creation of the Lee Specialty Clinic did not occur overnight. In fact, it took years of collaboration between doctors, families, advocates, self-advocates, policy makers and  governmental  professionals,  but  its existence stands as a testament to what can be achieved when all of these groups work together for the benefit of people with IDD. The  origin  of  the  Lee  Specialty  Clinic dates back  to  1999  when  a  dentist,  Dr. Henry  Hood,  a  family  advocate,  Louise Underwood and a state legislator, Representative Jimmie Lee worked diligently  to  create  a  pilot  dental  program.  After three years of advocacy, the Underwood and Lee Dental Clinic opened its doors to the public in 2002. At the time, it was estimated that the clinic might serve two or three hundred people with IDD from the Louisville metropolitan area.  By 2006, the clinic had received multiple awards for its innovative approach and quality outcomes and it was serving around 700 patients from over 30 counties in Kentucky. Some families drove five hours across the state just to come to the clinic.

 Read more...

Tuesday, August 5, 2014

Old News is Good News for Disability Housing Choices

I missed this story in January, but it is an important one. 

Remember the foofaraw in April of 2013 when the U.S. Department of Housing and Urban Development (HUD) decided that a housing project for deaf seniors in Arizona was discriminating against the non-deaf by allowing too many deaf people to live there? It even made the New York Times in an article entitled "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination" by Fernanda Santos, 4/28/13. The project called  Apache ASL [American Sign Language] Trails is specifically designed to meet the needs of people who are deaf and use American Sign Language as their mode of communication.

These are excerpts from a press release from the Arizona Department of Housing dated 1/24/14: 

STANDOFF WITH HUD OVER DEAF HOUSING COMMUNITY ENDS

Tempe, Ariz. – Ending a two-year legal standoff over the award-winning Apache ASL Trails community, the U.S. Department of Housing and Urban Development (“HUD”) today announced that it has withdrawn its Letter of Findings and closed the investigation involving Apache ASL Trails. In a letter to Director Michael Trailor of the Arizona Department of Housing, HUD concluded that Section 504 does permit Apache ASL Trails to give priority in rental to those individuals who need the accessibility features of the units.

Today’s resolution comes with a promise from HUD that it will permit Apache ASL Trails to continue offering priority to applicants who need the unique accessibility features provided at the community.

Trailor, who has long championed the rights of deaf Arizonians to have full and equal opportunity to access the housing of their choice, applauded today’s resolution, saying, “All citizens have the right to be a vibrant part of their community, to choose where they want to live.”

After receiving approval from HUD in 2008 to build the low income apartment complex to provide accessible housing to individuals who were deaf, hard of hearing, and deaf-blind, the 75 unit apartment complex in Tempe, Ariz., called “Apache ASL Trails” opened its doors and quickly became a thriving, barrier free, and vibrant community. In June of 2011, Apache ASL Trails won the prestigious Charles Edson Tax Credit Excellence Award for Accessible Design. Days later, HUD issued a Letter of Findings that placed a cloud over the successful community, saying that too many deaf people lived at Apache ASL Trails. The State of Arizona, in support of Apache ASL Trails challenged the Letter of Findings and the two-year standoff began. In February of 2013, HUD issued a letter directing the City of Tempe to terminate the Section 8 vouchers that had been promised.....

Perhaps more important than the physical features is the embracing of culture and language that allows residents to communicate in American Sign Language with the manager, their neighbors and with the hairdresser, doctor, and other service providers who have offices on the first floor. Hearing residents are provided interpreters so that they too can participate in the active social life at Apache ASL Trails. The motto of this wonderful and accessible housing is “Banish Extreme Loneliness.”.......

This resolution comes as a great relief to the residents, who have eloquently asserted their rights to be a part of their community and to have housing that is both safe and barrier free....

******************************
Excerpts from the letter to HUD from the National Association of the Deaf, 4/25/13 

Section 504 of the Rehabilitation Act of 1973
(29 U.S.C. § 701)

"No otherwise qualified individual with a disability in the United States,... shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. The head of each such agency shall promulgate such regulations as may be necessary to carry out the amendments to this section made by the Rehabilitation, Comprehensive Services, and Development Disabilities Act of 1978..."

Friday, August 1, 2014

Autism Self Advocates Respond to WP Article on Abuse

The Washington Post reported a crime story on July 21st, 2014, about 22-year-old autistic twins who were found in deplorable conditions in their parents' house in Rockville, Maryland. The twins were locked up at night "in a basement room with no furniture, no working lights and a single comforter on a bare tile floor, according to Montgomery County arrest records." They were discovered when police came to the house on an unrelated matter. The parents were susbsequently charged with abuse and false imprisonment.

As is often the case, when a sensational story such as this one is widely publicized, it sets off further discussion of related and tangential issues. For example, incidents involving mass shootings by people with untreated severe mental illness led to widespread discussion and reflection about society's responsibility to people with mental illness and their families with related appeals to restrict the access to guns by people who are mentally unstable. Discussions and commentary of this type can occur without interfering with the prosecution of crimes or sympathy for the victims.

In this case, many questions emerged from the crime report: What stresses are parents under in taking care of severely autistic adults?  Do they get the help they need and can further tragedy be prevented by assuring access to such help?  Do we as a society have a responsibility for our fellow citizens, both people who have severe disabilities and their family caregivers? In this vein, The Washington Post followed up with another article on 7/26/14, "Coping with adult children's autism, parents may face 'least bad' decisions" by Dan Morse.

The Autistic Self Advocacy Network (ASAN), a national non-profit organization that "seeks to advance the disability rights movement with regard to autism",  issued a statement on 7/29/14 beginning with, "The Autistic Self Advocacy Network is deeply concerned by both the recent case of abuse in Rockville, Maryland and the Washington Post’s reprehensible article calling the abuse of autistic adults the 'least bad' decision for families."

ASAN further states that,

"While much of our work focuses on the expansion of services and supports to people with disabilities across the lifespan, we emphatically reject and condemn any effort to present inadequate service-provision as the cause of or a mitigating factor in the abuse of people with disabilities by their families…

"People with disabilities deserve the same access to justice and the same freedom from abuse as the non-disabled population. Media narratives that sympathize with those who abuse their children set the stage for future copycat incidents, and make intervention by law enforcement and the broader community less likely. We urge a robust prosecution of John and Janice Land and encourage the Washington Post to review the appropriateness of their recent article justifying the abuse of the Land twins."

The title of The Washington Post article appears to have been inspired by a statement made by the father of another autistic adult who is quoted in the article as saying, "We can't condone their choices,…but it's possible that, in their minds, this was the least bad way to deal with this." Nowhere in the article does anyone condone the abuse of people with autism, but there is empathy with the parents, especially by other parents who are often placed in a position of trying to do more than most people would believe is humanly possible in caring for their children and then continue to do it without help or relief.

That this might be a mitigating factor in sentencing for the parents will be up to the court to decide, but empathy with the parents in this case is not the same as condoning or dismissing what they have done. As far as "future copycat incidents",  I would think that the public humiliation and shame that most people would feel in similar circumstances as this, would be enough to deter parents from doing the same and may even spur families to seek more help and advocate for more attention to factors that may lead to incidents of abuse and neglect. 


Outside of newspaper reports on this case, I know nothing about the parents. They may just be horrible people who deserve no sympathy, or they may have been at the end of their rope, pushed "over the cliff" by circumstances beyond their control, or something in between, but empathy for parents, understanding, and reflection are not equivalent to promoting criminal behavior.

See Adults with Autism "going over the cliff"

Thursday, July 31, 2014

Adults with autism: "Going over the cliff" into adulthood with tragic results


JaLynn Prince from the Madison House Autism Foundation 

The phrase, "going over the cliff",  has become a standard description of what happens to far too many adults with autism who no longer qualify for educational services and are left with not much to do and nowhere to go. When the autism diagnosis includes intellectual disabilities, severe behavioral problems, and a need for constant care and supervision, family members are forced to adjust to an even more difficult situation than when their children were in school. Parents especially may feel a desperation that makes them wonder if this is a job they can ever retire from and what will happen when they can't do it anymore?

The Washington Post first reported a crime story on July 21, 2014, "Rockville, Md., couple charged with abusing twin 22-year-old autistic sons" by Dan Morse. Police came to the house with a search warrant on an unrelated matter and found the twins, locked in "a basement room with no furniture, no working lights and a single comforter on a bare tile floor."  The men's parents locked the twins into the room at night and had removed furniture because it was soiled. The room was locked from the outside and smelled of urine. This led to further investigation and charges of abuse and false imprisonment brought against the parents.

The crime report set off a more general discussion about the lack of services for autistic adults and the difficulty in caring for people with the most severe and complex forms of autism. The Washington Post published another article on 7/26/14, "Coping with adult children’s autism, parents may face ‘least bad’ decisions" by Dan Morse. The article included a story, not about abuse and neglect, but about another autistic young man whose parents appear to be exceptionally resourceful in figuring out how to keep him safe while living in the family home. Nevertheless, they have had to make considerable sacrifices to take care of him and still face situations that even they are not prepared for:

"...As [John's father] speaks, his 18-year-old son John starts to pace and moan in the kitchen. John typically won’t sit down for dinner until he and his parents are around the table, holding hands, his father saying the blessing. Mark walks toward the kitchen, past the locked front door, the locked door to the garage, the locked door to the basement. Those barriers, along with a tracking device John wears, the burglar alarm and the fence around the house, are designed to keep him from wandering off.

"But sometimes, even that isn’t enough. Three years ago, wearing green pajamas, John made his way to a Metro train platform four miles away just before a train came barreling into the station.


"For parents like the Bucknams, their children’s transition to adulthood is filled with gut-wrenching choices and challenges. The assistance connected with high school programs goes away. The best adult services often are at the end of long waiting lists. The pressures mount for parents to prepare for life after they’re gone…."


Later in the article a quote from Mr. Bucknam appears that is apparently the inspiration for the title of the article:


“'We can’t condone their choices,' says Mark Bucknam… 'But it’s possible that, in their minds, this was the least bad way to deal with this,' Bucknam says."


This set off a reaction from a number of disability advocacy groups condemning the paper for, in their view, offering an excuse for, rather than condemnation of, abusive treatment of people with disabilities by their parents or other caregivers. I don't see it that way, but more about that later.

Monday, July 28, 2014

U.S. House Bill proposed to help caregivers avoid an impoverished old age

From the New York Times, "Addressing Caregivers’ Loss of Retirement Income" by Paula Span, 7/25/2014:

"Earlier this month Representative Nita M. Lowey, Democrat of New York, introduced what she’s calling the Social Security Caregiver Credit Act, intended to increase retirement income for middle-class citizens who must reduce their work hours or leave the work force because of caregiving duties."


Passage of the bill is a long shot, but it offers one solution to the financial toll that caregivers pay to take care of a dependent family member. According to the article:

"A MetLife study in 2011, ...estimated that men who reduced work hours to provide care for parents received almost $38,000 less in Social Security benefits. If they stopped working, they gave up more than $144,000.


"The damage from cutting back on work was worse for women: they lost more than $64,000 in Social Security benefits. Leaving the work force to care for a parent cost them more than $131,000 in addition to the lost wages (and, sometimes, pension contributions) themselves."
 

Caregiver credits would apply to people who earn no more than the national average wage ($44,320 in 2012).

According to Chris Bigelow, Lowey's legislative director, "someone not working at all would get $22,000 recorded as his or her earnings that year; someone working part-time at an annual $33,000 salary gets an additional $5,500 credited. Caregivers could qualify for the credit for 60 months and wouldn’t have to use them consecutively. You could take care of your mother for a year, get a credit, return to work, then later get credit if you cared for your father."


A "dependent relative" includes adult children who are "chronically dependent" and need assistance with activities of daily living.

Tuesday, July 22, 2014

Community Choice Coalition Events and Updates

This is an announcement of events and updates from Desiree Kameka from Madison House Autism Foundation, Rockville, MD, and the Coalition for Community Choice:

Greetings Coalition for Community Choice,



I hope the summer is treating you well. Below, are a few important dates to be aware of in the upcoming weeks:

1) Many states have already gone through a round of public comments on their state transition plan [to comply with CMS rules on Home and Community Based Service settings]; keep checking the HCBS Advocacy website to be informed of your state deadlines and information. Thirteen states are expected to submit their waiver applications by September 2014. Transition plan deadlines in FL, NY, GA, and ND are coming up this month. Please feel free to contact me for assistance in preparing public comments.

2) The 2014 National HCBS Conference is scheduled for this September 15 -18, 2014 in Arlington, VA. I am attending and would like to connect with any CCC members who will also be there so we can strategically make contacts and garner as much information as possible. Email me if you are attending. You can view last year’s plenaries and materials on their website.

3) The Brookwood Community Networking Days Conference is coming up August 20-22. Check out this video of Michelle, a Brookwood citizen, describing why we need more Brookwoods in the world.
 

Thank you to Homes for Life, Safe Haven Farms, Casa de Amma, and Down Home Ranch for your recent contributions to the work of CCC. For those who missed it, here is a letter from Jerry Horton of Down Home Ranch offering an opportunity to support our collective mission of choice.

Cheers,


Desiree Kameka
National Coordinator, Community Choice Coalition
Madison House Autism Foundation


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

The Coalition for Community Choice (CCC) is a national grassroots collaboration of persons with disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and services providers to advance the principle that community can be experienced in all residential settings. CCC was created to 1) promote and defend the rights of people with intellectual and developmental disabilities (I/DD) and autism to choose their residential settings from the broadest range of options; 2) educate federal and state governments on innovative Olmstead-compliant housing alternatives to “one-size fits all” approaches; and 3) preserve access to essential, publicly-funded services and supports in these settings.

Michigan's transition plan for HCBS settings is not due until March 2015. Check here for updates and more information.