Michigan Medical Necessity Criteria for all Medicaid DD services

UPDATE:  5/16/19

This if from the Michigan Medicaid Provider Manual and applies to all Medicaid services for people with developmental and other disabilities. PIHPs (Prepaid Inpatient Health Plans) are the regional mental health agencies in Michigan. Take note of the last paragraph [UPDATED on 4/1/19]:

A PIHP may not deny services based solely on preset limits of the cost, amount, scope, and duration of services. Instead, determination of the need for services shall be conducted on an individualized basis. [This wording has the same meaning as it did in previous versions of the Medicaid Provider Manual, but it is a little more concise.]

The following medical necessity criteria apply to Medicaid mental health, developmental disabilities, and substance abuse supports and services

Medical Necessity Criteria
Mental health, developmental disabilities, and substance abuse services and treatment:

• Necessary for screening and assessing the presence of a mental illness, developmental disability or substance use disorder; and/or 
• Required to identify and evaluate a mental illness, developmental disability or substance use disorder; and /or
• Intended to treat, ameliorate, diminish, or stabilize the symptoms of mental illness, developmental disability or substance use disorder; and/ or
• Expected to arrest or delay to progression of a mental illness, developmental disability or substance use disorder; and/ or
• Designed to assist the beneficiary to attain or maintain a sufficient level of functioning in order to achieve his goals of community inclusion and participation, independence, recovery, or productivity.

The determination of a medically necessary support, service or treatment must be:

• Based on information provided by the beneficiary, beneficiary’s family, and/ or other individual’s (e.g., friends, personal assistants/ aides) who know the beneficiary; 
• Based on clinical information from the beneficiary’s primary care physician or health care professionals with relevant qualifications who have evaluated the beneficiary; 
• For beneficiaries with mental illness or developmental disabilities, based on person-centered planning, and for beneficiaries with substance use disorders, individualized treatment planning; 
• Made by appropriately trained mental health, developmental disabilities, or substance abuse professional with sufficient clinical experience; 
• Made within federal and state standards for timeliness; 
• Sufficient in amount, scope and duration of service(s) to reasonably achieve its/ their purpose; and
• Documented in the individual plan of service.

Supports, Services, and Treatment Authorized by the PIHP must be:

• Delivered in accordance with federal and state standards for timeliness in a location that is accessible to the beneficiary; 
• Responsive to particular needs of multi-cultural populations and furnished in a culturally relevant manner;
• Responsive to the particular needs of beneficiaries with sensory or mobility impairments and provided with the necessary accommodations; 
• Provided in the least restrictive, most intergrated setting. Inpatient, licensed residential or other segregated settings shall be used only when less restrictive levels of treatment, service or support have been, for that beneficiary, unsuccessful or cannot be safely provided; and
• Delivered consistent with, where they exist, available research findings, health care practice guidelines, best practices and standards of practice issued by professionally recognized organizations or government agencies.

PIHP Decisions:

Using criteria for medical necessity, a PIHP may:

Deny services that are:

• Deemed ineffective for a given condition based upon professionally and scientifically recognized and accepted standards of care; 
• Experimental or investigational in nature; or
• For which there exists another appropriate, efficacious, less -restrictive and cost-effective service, setting or support that otherwise satisfies the standards for medically-necessary services; and/ or
• Employ various methods to determine amount, scope and duration of services, including prior authorization for certain services, concurrent utilization reviews, centralized assessment and referral, gate-keeping arrangements, protocols, and guidelines.

A PIHP may not deny services based solely on preset limits of the cost, amount, scope, and duration of services. Instead, determination of the need for services shall be conducted on an individualized basis. [updated in the Medicaid Provider Manual on 4/1/19]

Florida: Governor boasts of helping disabled while decreasing funding and increasing the waiting list

This is from an editorial in the Miami Herald, "Floridians with developmental disabilities need more help " by the President of the Autism Society of America Ven Sequenzia, Jr., 9/25/14.

Rick Scott, the Governor of Florida, claims to be helping people with DD by increasing the state budget to reduce the "critical needs" waiting list for services. The truth is, according to Sequenzia, that:

• "The Medicaid Waiver budget for 2013-14 was $915 million, or $46 million below the 2008 budget. It was actually the third lowest budget in the last six years.
• "This while the waiting list grew from 15,648 in Sept. 2007 to 21,140 in June 2014.
• "Now the final straw. The Agency for Persons with Disabilities (APD) returned approximately $80 million 'unspent' from this fiscal year to the state treasury. Yes, you read that correctly. Gov. Scott not only reduced spending, the agency returned unspent money, while 21,000 people are languishing on a waiting list."

Furthermore, to add insult to injury, "[The Governor] allows the wait list to increase by almost 5,000 people in 2014, all the while taking thousands of families to hearings to deny needed services based on the iBudget rules and an algorithm that the District Court of Appeals threw out as illegal. He included $4.5 million dollars in the APD budget for legal fees to fight families, and those funds go to the law firm that his chief of staff is associated with."

Floridians should be fuming.

Minnesota: Moving disabled out of congregate settings leads to clashes with elderly

Heights Manor in Columbia Heights, Minnesota, provides subsidized housing to low-income seniors. According to an article in the Minneapolis Star Tribune, more and more people with disabilities are being moved out of congregate residences (group homes and institutions) and into public housing projects, leading to clashes with elderly residents.   The article , "Influx of disabled residents leads to clashes in senior housing" by Chris Serres, 9/8/14, says that "Heights Manor, much like subsidized senior housing across Minnesota, is being pulled apart by a recent influx of younger people with disabilities, who are being forced by a tight rental market and a shortage of affordable apartments to live with the elderly. Statewide, the percentage of people with disabilities in public housing increased 24 percent between 2009 and 2012, the last year for which data are available, according to the U.S. Department of Housing and Urban Development."

Furthermore, "Disability advocates say such tensions are likely to intensify as the state moves forward with ambitious plans to further desegregate housing for people with disabilities. Under pressure from the federal courts, which recently admonished Minnesota for not moving quickly enough to integrate people into the community, state and local authorities are preparing to move thousands of people with mental and physical disabilities from group homes and other institutional settings to individual apartments."
 
Some of the incidents that have occurred at Heights Manor suggest that some of the new residents may have untreated mental illness or other mental disabilities: "One of the new residents would walk around the building while jabbing at the air with her hands, saying she was 'chasing away the devil,' residents said. Another new resident, a young man, was seen smoking marijuana on the third-floor balcony and playing rap music late at night. When elderly residents urged him to turn down the music, he screamed at them to leave him alone, Hall said."…"On July 4th, a half-dozen local police officers descended on Heights Manor after a resident in a wheelchair pointed a BB gun at a resident and then locked himself in his second-floor room. After kicking in the man’s door, police discovered a semi-automatic pistol as well as a rack with knives and a revolver mounted on a display in his bedroom, according to a police report."

Many of the senior residents are frightened and avoid places they used to congregate to play cards and socialize.

I can empathize with both groups in the housing projects. It is troubling that the anonymous state and local officials who came up with this idea did not foresee the problems in advance or did not care. The senior residents complain about disorderly conduct, unsafe conditions, and noise and disabled residents complain about discrimination by the elderly. The motivation for moving disabled people out of congregate care is supposedly for them to be integrated into the greater community. Instead, they are herded into public housing projects with other low income people, apparently not to integrate with the community, but to lessen the costs to taxpayers and to relieve government of the responsibility to provide humane and appropriate treatment.

*****************
Is accommodation of seniors in congregate settings age discrimination in housing? Not according to the federal Fair Housing Act.
  
A Department of Housing and Urban Development (HUD) website on the Senior Housing Exemption states the following:



"Although the FHAct was amended in 1988 to prohibit discrimination on the basis of disability and familial status, Congress intended to preserve housing specifically designed to meet the needs of senior residents. Housing that meets the FHAct definition of housing for older persons is exempt from the law's familial status requirements, provided that:

• HUD has determined that the dwelling is specifically designed for and occupied by elderly persons under a Federal, State or local government program or
• It is occupied solely by persons who are 62 or older or
• It houses at least one person who is 55 or older in at least 80 percent of the occupied units, and adheres to a policy that demonstrates intent to house persons who are 55 or older.

"Therefore, housing that satisfies the legal definition of senior housing or housing for older persons described above, can legally exclude families with children."

Deinstitutionalization: Not a good idea for everyone with Severe Intellectual and Developmental Disabilities

This is an article that was written by Tamie Hopp, the Director of Government Relations & Advocacy for VOR, the only national organization that supports a full range of residential and service options for people with intellectual and developmental disabilities. This includes support for institutional care in Medicaid-funded Intermediate Care Facilities as well as group homes, home and community based services, and care provided in the home of a family member or friend. The article, "People as Pendulums...", gives a history of reforms to the system of care for people with disabilities, along with warnings that we have gone too far in closing institutions and other forms of congregate care (serving people with disabilities in groups of more than three).

********************************************
 
People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities
Written by Tamie Hopp
Created on Wednesday, 16 July 2014 14:0 for the Nonprofit Quarterly

In 1965, then-Senator Robert Kennedy toured the Willowbrook institution in New York State and offered this grim description of the individuals residing in the overcrowded facility: “[They are] living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”[i]

The atrocities of Willowbrook ushered in a generation of advocates, nonprofit organizations, providers, and professionals who successfully pushed for massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR), later renamed as ICFs for Individuals with Intellectual Disabilities (ICFs/IID).

Families and advocates alike applauded this infusion of federal funding, licensing, and oversight for a program specifically designed to meet the needs of individuals with intellectual and developmental disabilities (I/DD).

Still, as the ICF/IID program grew, so did calls for housing alternatives. Critics emerged, claiming that the ICF/IID federal standards of care promoted a non-individualized, inefficient model of care, and, due to federal financing incentives, discouraged states from developing alternate service options.[ii] In 1981, Congress responded by providing for small (4-15 person) ICFs/IID and a Medicaid Home and Community-Based Services (HCBS) waiver, to allow states to “waive” certain ICF/IID requirements.

These early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.” 

The Pendulum Swings
 
Even though initial reforms were motivated by a lack of service options (an over-reliance on the ICF/IID program), it was not long before efforts to “rebalance” our system of care shifted from the expansion of options to the dramatic reduction of ICFs/IID and other specialized options.
 
In 1999, the Supreme Court handed down its landmark Olmstead v. L.C. decision, which should have settled the deinstitutionalization debate. The Court expressly cautioned against forced deinstitutionalization, the “termination of institutional settings for persons unable to handle or benefit from community settings,”[iii] finding instead that the Americans with Disabilities Act (ADA) only requires community placement when an individual’s treatment professionals determine community placement is appropriate, such placement is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.[iv]
 
However, masterful messaging by nonprofit organizations and federally funded lawyers with mission statements and funding aimed squarely at eliminating all “institutional” options quickly (and incorrectly) characterized Olmstead as a deinstitutionalization “mandate” requiring “community integration for everyone.”[v]   While deinstitutionalization proponents had successfully closed many ICF/IID homes by 1999, the time of the Olmstead decision, the decision has only further fueled their efforts in the years that followed.
 
Has the Pendulum Swung too Far?
 
According to Samuel Bagenstos, former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases, the population of state institutions for I/DD now stands at approximately 16 percent of its peak.[vi]
 
The exit of ICFs/IID from the service landscape created a vacuum that lured nonprofit and for-profit providers into the business of human services. Between 1977 and 2010, the number of residential settings that served people with I/DD increased by a remarkable 1,598 percent, with most of these new settings being small and privately operated. In 2010, non-state agencies served 98.5 percent of people living in places with 6 or fewer residents. The number of home and community-based services recipients outpaced residents receiving specialized Medicaid licensed ICFs/IID by 676.1%, while the number of people receiving ICFs/IID care decreased by 63 percent.[vii]
 
As early as 1993, then-U.S. Rep. Ron Wyden (D-OR) pointed to the problems created by an unchecked expansion of providers rushing in to fill a need. “Increasingly, millions of Americans with these life-long handicaps are at risk from poor quality of care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies,” wrote Wyden in a March 22, 1993 report in his capacity as Chairman of the Subcommittee on Regulation, Business Opportunities, and Technology of the U.S House Committee on Small Business.[viii]
 
In 2000, the American Prospect magazine reported similar problems in its article, “Neglect for Sale,” which investigated a disturbing trend of large for-profit corporate providers capitalizing on the then-$22 billion (now more than $40.5 billion) in government spending on services for people with disabilities, turning care for individuals with I/DD “into a major growth industry.”[ix]
 
“It should not be surprising,” Bagenstos wrote, “that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.”[x] State officials were not keen on investing in the development of adequate community services after being told closing ICFs/IID would save them money, resulting in inadequate funding and compromised care. Bagenstos acknowledges adequate investment in community services, especially due to the cost of quality staffing, will meet or exceed the cost of ICF/IID care.[xi]
 
These outcomes are made all the more tragic due to their predictability. The failed deinstitutionalization of the mentally ill should have been an important lesson learned. “As events played out, large state institutions [for the mentally ill] were indeed shut down in the 1970s, but the promise of high-quality community-based care collided with the fiscal cutbacks of the 1980s,” wrote Eyal Press, author of “Neglect for Sale.”[xii]   Homelessness, incarceration and violence raise questions about “whether society’s concern for the constitutional rights of people with mental illness has led to their abandonment.”[xiii]
 
Predictable Tragedies as the Price of Progress
 
Even if some license is afforded to “hope”—a “hope” that history would not repeat itself when deinstitutionalizing individuals with I/DD—there is no excuse for continuing down a path that has in its wake repeated, widely reported tragedies in small settings for people with I/DD.
 
More than 150 media reports in more than 30 states since 1997 reveal systemic concerns in small settings for people with I/DD, including deaths, abuse, neglect, and financial malfeasance. In November 2011, the New York Times wrote that more than 1,200 people with I/DD in the past decade have died in group homes due to “unnatural or unknown causes.”[xiv] U.S. Senator Chris Murphy (D-CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.” [xv]
 
Georgia offers a particularly poignant example of the extremes by which “success” is defined by proponents of forced deinstitutionalization. An October 2012 federal settlement calls for the transition of its I/DD residents from ICFs/IID to community settings. In 2013, the state’s own reports showed that 10 percent (40 people) of those transferred to community settings in 2013 had died.[xvi]   Yet, United Cerebral Palsy, a national nonprofit organization, ranked Georgia fourth in the nation for its successful community inclusion of people with I/DD.[xvii]
 
Other symptoms of failed deinstitutionalization are less obvious, but no less harmful to people with I/DD. Waiting lists for I/DD services now number nearly 317,000 people,[xviii] emergency rooms have become de facto urgent care clinics for people with I/DD, and correctional facilities are replacement treatment centers for some individuals who experience both mental illness and developmental disabilities.
 
Conclusion: Why does this continue?
 
The original goal of deinstitutionalization, to provide opportunity to individuals not appropriately institutionalized and “rebalance” the system, was shared by advocates.
We have passed the 50 percent mark in most states—that point of “balance” when half the Medicaid funding for people with I/DD was spent on HCBS options and half on facility-based (“institutional”) options. In fact, the United Cerebral Palsy reported that “38 states now meet the 80/80 Community standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for community support.”[xix]
 
As advocates marched toward “balance,” and in most states exceed it, tragedies followed and seem to be more widespread. These tragedies, which should have been a wake-up call, have done nothing to stem aggressive deinstitutionalization. State-level fiscal conservatives still loathe spending money, yet safely serving people with complex needs requires adequate funding. Proponents for “community integration for everyone”—advocates, nonprofit organizations, federal agencies and providers—have a lot at stake, past and present. To change paths now is to admit failure and risk future funding.
 
Lost in this debate is concern for the individual. Person-centered planning, which is held up as the ideal by advocates, nonprofit organizations, and government alike, is short-changed by system-change advocacy to eliminate specialized care options for those who need it. Instead, we must figure out ways to meet individual needs versus wholesale approaches to providing care that end up being as bad as or worse than having an institution as the only option.
 
The legal framework is in place to support individualized care and choice. Advocates must set aside efforts to eliminate options of care and work together to expand options. This begins with a commitment to serving each individual: true person-centered planning.

Tamie Hopp is the Director of Government Relations & Advocacy with VOR, a national nonprofit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities. For more information, visit www.vor.net.

See this article on-line to read the footnotes.

See also VOR's documentation of abuse and neglect in small settings.

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.

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...

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....

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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..."

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

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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.

Home Help Program for people with disabilities: Michigan audit finds shoddy oversight, poor management, and improper payments

Michigan's Medicaid-funded Home Help Program that provides services to elderly and disabled people in their own homes is fraught with problems, according to a perfomance audit by the Michigan Office of the Auditor General.

According to the Lansing State Journal from 6/17/14, "Audit: Michigan improperly spent $160M on Medicaid", expenditures on improper payments (where the state failed to obtain sufficient documentation from service providers) accounts for 18% of the $894 million spent on the Home Help program that served about 67,000 people per year over a three year period.

In addition, "...Auditors said nearly 3,800 of roughly 70,000 home health providers had felony convictions, including 572 convictions for violent crimes…"

According to the  Lansing State Journal: 

"The audit also found that the state:

• overpaid 80 agencies $6.8 million by not making sure they met requirements to get higher fees than individual aides.
• hired a contractor in 2008 for $1.4 million to visit DHS [Department of Human Services] county offices over three years to review home health cases, yet the case file reviews were not forwarded to the offices for corrective action on time. The Community Health Department blamed a lack of staff for the delay.
• inappropriately paid $3.5 million for home services when the patients were instead being hospitalized or in nursing homes.
• did not review thousands of W-2 forms returned as undeliverable, missing a chance to crack down on clients fraudulently getting services or their relatives providing a false address to avoid cuts in the clients’ authorized service level.
• failed to create a process for caseworkers to refer suspected fraud to the attorney general’s office."

What is the significance of a dysfunctional Home Help Program?
 
Home Help Services are mandatory under Medicaid, meaning that they must be available to all eligible individuals. Medicaid funding for Home Help Services, paid for by both federal and state governments, is a significant factor in allowing many people with developmental and other disabilities to live in their own homes. It is almost always a component of providing care in unlicensed supported living settings. The findings in the audit of Michigan's program, however, exemplify problems more generally with community care, especially for those with severe, profound, and complex disabilities: funding and the provision of services is so fragmented that the system of care is often unmanageable. This is aggravated in this case by cuts in funding to state government that, if they had not been a legislative priority, might have allowed more and better oversight, ultimately saving taxpayers money and improving the lives of people with disabilities.

Under these conditions, accountability for the provision of services and the expenditure of funds, in addition to assuring the health and safety of the people receiving services, is illusory at best. Federally-funded disability advocacy groups and the Centers for Medicare and Medicaid Services (CMS), the federal agency that regulates Medicaid and Medicare, are pressuring states to turn away from any kind of congregate care and service settings (settings that serve more than three people with disabilities together), just when innovative care in congregate settings and maintaining high quality care in settings that are considered "institutional", might be a solution to the problems of fragmentation, mismanagement, and lack of accountability. Those who choose and would benefit from care in congregate settings, usually people with more severe and complex disabilities, also cost more to care for regardless of where they live. Congregate settings that offer economies of scale contribute to cost-efficiency and better use of taxpayers' money.

The Kalamazoo Promise: Genorosity trumps the pervasive mood of mean-spiritedness

These are gloomy days for anyone trying to understand where and when we took a turn for the worse and began to see dependence, unemployment, poverty, disability, and mental illness as an affront to our way of life, worthy of scorn and contempt.

People with developmental disabilities are not immune from this meanness of spirit, even within the "disability community". Federally-funded disability advocacy groups along with our misguided U.S. Department of Justice, seem hell-bent on bringing down the infra-structure of specialized services and residential options, especially those for people with the most severe disabilities, in the name of freedom and integration. Parents, other family members, and friends are dismayed by the seeming lack of understanding and compassion for their loved-ones. They are casually dismissed as interfering with the judgment of professionals, left out of decisions affecting their family members, and even blamed for keeping people with permanent life-long disabilities in a state of dependence.

This story from the Detroit Free Press,  "Kalamazoo Promise has changed more lives than just the students'" by Bob Jorth, 5/24/14, has nothing directly to do with developmental disabilities, but it is an example of how a small city in southwestern Michigan took on the daunting challenge of providing their children who graduate from Kalamazoo's public high schools with scholarships to any of Michigan's state colleges and universities. 65% to 100% of tuition, depending on the number of years of attendance in the public school system, is paid by anonymous donors to the Kalamazoo Promise .

According to the Detroit Free Press article, the Kalamazoo Promise benefits more than just the students:

"… Students graduating from Kalamazoo Public Schools will be graduating with the Kalamazoo Promise and its assurance that they can go to any of the 43 state-supported universities and community colleges tuition-free. This gift will allow them to focus on their dreams and passions rather than concentrate on how to pay for their education. To date, about 40% of Promise graduates are earning their degrees debt-free, and the median debt for others is less than $5,000

"We’ve seen improvements in K-12 test scores, average grade-point average, behavior and attitudes of students, parents and school staff and a decline in the drop-out rate. There is a 20% improvement in student performance at Kalamazoo Valley Community College, where many first-generation students begin. And more than 90% of all graduates are now starting college in a district where 70% of its students receive free and reduced lunch." [emphasis added]

"…Measuring the full impact of the Kalamazoo Promise has just begun, and the work is difficult at best. Enrollment in the Kalamazoo Public Schools has increased nearly 25% since the announcement of the Promise."

And that is how generosity of spirit overcomes the impulse to turn away from our problems and lash out at our fellow citizens.

More on the Kalamazoo Promise from the New York Times, 9/13/12: "Why These Kids Get a Free Ride to College" by Ted Fishman.

Lucy Remembered

My best dog-friend died last week in a freak accident and we are heartsick. Lucy was eleven years old, in good health, and in fine shape, but her luck ran out. Now we must do what she would have wanted: carry on, live for the moment, be kind to our animals, and do not get too angry when the dog gets into the garbage.

Lucy was a Labrador Retriever and Treeing Walker Coonhound mix. This is not an ideal combination if you are looking for a calm dog with good social skills to build rapport with neighbors and visiting relatives. She was hyper alert, always watching us to see what our next move would be and whether it would involve food. She also scouted continuously for new hunting opportunities. In her younger years, before she mellowed with age, she caused me some embarrassment when we went for walks together. When a neighbor with a dog approached us, Lucy would go into a low crouch, expertly stalking the neighbor or the dog, it was hard to tell which, as they passed nervously by.  She never actually attacked or bit anyone, but try telling that to someone who is being stalked by a hunting dog.

Lucy was insanely happy, as most Labs are. She possessed a goofiness that was as entertaining as it was sometimes disconcerting.  Fortunately for the cats, she did not treat them as prey, but she did instigate playful combat with them. A recliner chair that also rocks and spins around in circles was the perfect venue for such combat. One cat sat up on the back of the chair to watch while the other stationed herself in the seat. Lucy thrust her nose threateningly at the lower cat, who then set in motion a carousel-like ride, propelled by the cat slapping Lucy’s muzzle with her paw every time the chair spun around to meet the thrust of Lucy’s nose.

With the exception of her often troubled puppyhood, Lucy never had a sad day.  She loved to wake up in the morning, she loved to sleep away half the day, and she could sit for hours in the evening, always on the furniture that allowed her to observe us at eye level, watching to make sure we didn’t do anything without her. Her loyalty to her immediate family was beyond reproach. She protected us from deer, other dogs, and strangers approaching from half a block away.

Lucy made us better people for her time with us and we could not have hoped for a better dog.
 

Michigan Disability Advocates and Campaign Finance Shenanigans

An article in the Detroit News from March 10, 2014, "Mich.slaps health care union with 2nd largest elections fine ever", by Chad Livengood, covers campaign financing law violations by the Service Employees International Union (SEIU) during a campaign to support a ballot proposal in the November 2012 election. The headline does not convey a surprising fact: Michigan disability advocates were involved as the treasurers of the campaign fundraising committees that were investigated and called to account for their handling of campaign funds and failures to meet reporting requirements in the law. The body of the article goes into some detail about Proposal 4, which was defeated in the election, and the campaign committees 
supporting it.

The article summarizes the actions by the Michigan Secretary of State:

"Secretary of State Ruth Johnson’s office slapped the labor union with a $199,000 fine for multiple campaign finance violations after it used a nonprofit corporation to funnel $9.36 million in contributions into a ballot campaign seeking the passage of Proposal 4 in 2012. The fine is the second largest in Michigan elections history...

"The ballot campaign, Citizens for Affordable Quality Home Care, received nearly all of its funding from a single company called Home Care First Inc., which received its funding from SEIU and Michigan-based affiliates, according to a Bureau of Elections investigation.

"Home Care First Inc. 'belatedly' set up a ballot committee that reported after the November 2012 election that all of its money came from SEIU and its affiliates, an investigative report states.

"The state found SEIU and campaign treasurers for the two committees violated the Michigan Campaign Finance Act for 49 transactions of commingling funds in multiple bank accounts, 31 contributions involving incomplete or inaccurate campaign statements and three late contribution reports."

Dohn Hoyle, the Executive Director of The ARC Michigan, a state advocacy organization for people with developmental disabilities, was the treasurer of the Citizens for Affordable Quality Home Care (CAQHC). Norman G. DeLisle, Jr., who has been the Executive Director of the Michigan Disability Rights Coalition (MDRC) since 1997, was the treasurer of Home Care First Incorporated (HCFI). 

The campaign committees were both formed in March 2012. CAQHC received donations funneled through HCFI without disclosing that the HCFI funds came entirely from SEIU-affiliated organizations. HCFI did not file all required forms with the state until just before the 2012 election and did not reveal the source of its funding until after the election. 

Hoyle, DeLisle, and the SEIU did not admit guilt and no criminal charges were filed as a result of the investigation. Instead,  a conciliation agreement was reached with the Secretary of State's Office with regard to the complaint, D'Assandro v Home Care First, Inc and Citizens for Affordable Quality Home Care and the $199,000 fine was levied by the Secretary of State. The SEIU and the disability advocates admitted that "mistakes were made" and claimed that they had not fully understood the campaign financing law. This is surprising, since presumably both the SEIU and the committee campaign treasurers had access to attorneys to advise them when they set up the campaign committees. 

Filling in the blanks: Why were disability advocates involved in a ballot proposal campaign?
 
Proposal 4, a statewide ballot proposal that was defeated in the November 2012 election, was meant to amend the Michigan constitution to continue to allow union representation and collective bargaining rights for Medicaid-funded Home Help Workers and to reinstate the Michigan Quality Community Care Council, which had been defunded by the legislature, and rename it as the Michigan Home Quality Care Council. The Council would continue to be made up mostly of advocates for people with disabilities and seniors and would act as the representative for employers of Home Help Workers for the purposes of collective bargaining with the state. The employers of home help workers are the seniors and people with disabilities who receive Medicaid funding to pay for help with household chores and personal care in their own homes. The Council would also have maintained a registry of workers who had passed background checks and would offer training to improve job skills. 

Other relevant facts:

The financial stake in the pro-Proposal 4 campaign was significant: The SEIU collected about $6 million per year in dues and fees from Home Help Workers and, prior to being defunded, the Council received about $1.1 million per year from the state. 

Many factors make Home Help Workers a difficult and unusual population to unionize:

• About 75% of the Home Help Workers in Michigan are family members or close friends of the seniors and people with disabilities who hire them. Often the employee is the parent or another family member. Even more complicated is the fact that the employee may also be the legal guardian of the employer, the senior or disabled person. 
• In 2005, when the election for unionization of Home Help Workers was held, only about 20% of those employed voted. There was confusion, especially among family members, about whether unionization applied to them at all, because many of them did not consider themselves "employees".
• Because the work takes place in the employers home, it is difficult to assess or regulate working conditions.
• The union was limited in how much it could bargain for increased wages because of  appropriations decisions made by the legislature.

It does not appear that seniors and people with disabilities had any say in who represented them in the collective bargaining process. 

The Home Help program has been around since the 1980's and its continued existence was not threatened by either the passage or defeat of Proposal 4.

Advocacy for whom?

The financial entanglements of the disability advocates with the SEIU during the proposal 4 campaign seems to be a conflict of interest with the advocates' representation of people with disabilities and seniors.
 
When advocates and their organizations claim to represent people with disabilities, they need to maintain their independence and avoid conflicts of interest. In this convoluted campaign to amend Michigan's constitution, advocates allied themselves with a labor union while simultaneously seeking to continue to represent seniors and people with disabilities in collective bargaining with the union. The participation  of disability advocates in campaign shenanigans of this magnitude certainly did not enhance the lives of people with disabilities nor did it protect the reputations of their organizations.

More information:

Michigan Secretary of State press release on the finance campaign investigation.

For more information on Proposal 4, see The DD News Blog.

To see documents relating to the complaint investigation, link here to the Secretary of State's website. Then scroll down to 8/30/2013, D'Assandro v Home Care … and link to documents in the right hand column, parts 1 - 12.

More news coverage on the campaign finance violations from Mlive and the Detroit Free Press

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P.S. - Irony Alert!

During the campaign for Proposal 4, a report from MIRS Capitol Capsule for April 10, 2012, quoted Mr. Hoyle as he complained about the the Governor signing a bill to reverse the ability of home help workers to unionize as state employees and the defunding of the MQCCC:

" Hoyle said he doesn’t understand people who have not talked with or dealt with MQCCC but are 'so bent on changing things without regard for what it does to people.'

"'To me it is just an ideological problem when people get so bent in one direction and ignore people who are on the other end of it, those with disabilities and those who are older,' he said. 'That’s just sad in my mind.'"

Many families will appreciate the irony of Mr. Hoyle's complaints, considering his own ideological bent and the adverse effects it has on people with disabilities. See "The ARC Michigan to state: Stop funding congregate settings" and "The ARC Michigan: Our way or the highway" 

Michigan Employment First Policy: One size fits all?

The Michigan Developmental Disabilities Council approved a policy called "Employment First in Michigan" in August of 2013 which was then submitted to the Michigan Department of Community Health (MDCH) for consideration as state policy. [As a new member of the DD Council, I did not attend any Council meetings until September 2013 and did not vote on the policy.] The vote by the DD Council was not unanimous.

A meeting was held on November 20, 2013 with representatives of the Michigan Department of Community Health (MDCH) to discuss the proposed policy where many good suggestions were made to make the language consistent with the Americans with Disabilities Act, the Supreme Court Olmstead decision interpreting the ADA, and to honor the right to choice and self-determination.

The proposed policy, however, was not changed to reflect any of the comments from the November meeting. Bob Brown, a parent of an adult with developmental disabilities and a member of the DD Council wrote to James Haveman, the Director of MDCH, voicing his concern that if changes were not made, the document would lead "…to an outcome that restricts and diminishes an individual's choices rather than expanding them." Bob is most concerned that the policy as currently worded will be used to eliminate the choice, based on individual need and preferences, for programs where people like his daughter receive community-employment through a center-based program that also offers skill-building services for people with cognitive disabilities. 

I would further emphasize the broad spectrum of people with disabilities, many of whom can work successfully in integrated employment settings and others who, like my sons, are unlikely to achieve anywhere near this level of accomplishment without a miraculous recovery of functioning or some other unlikely medical breakthrough. High expectations and lofty goals for achievement can be inspiring for some, but demoralizing and damaging for others, taking the focus off appropriate services that help individuals achieve realistic goals and assure safety, good health, appropriate care, and well-being.

You can see Bob Brown's comments here. His recommendations include changes that are consistent with federal law regarding employment for people with disabilities. A Word version of the proposed policy, without comments, can be found here.

If you wish to support Bob's comments (or not) on the Employment First Policy or add comments of your own, address them to:

Mr. James Haveman, Director
Michigan Department of Community Health
Capitol View Building
201Townsend Street
Lansing, Michigan 48913
 
You can e-mail comments to Nancy Grijalva at  grijalvan@michigan.gov or Sharon Danielis at  danielis@michigan.gov in Mr. Haveman's office.

Michigan Forum on Integrated Care for Dual Eligibles

The Integrated Care Forum is about Michigan's plan, scaled back to a 3-year demonstration project, to integrate care for dual eligibles (beneficiaries of both Medicare and Medicaid). A surprising number of dual eligibles have developmental disabilities, are under the age of 65, and receive DD mental health services from local Community Mental Health agencies making this an important issue for people with DD.

The demonstration project will be implemented in four regions of the state:

• Region 1: all counties in the UP
• Region 4: Southwest Michigan including Berry, Berrien, Branch, Calhoun, Cass, Kalamazoo, St. Joseph, and Van Buren Counties.
• Region 7: Wayne County
• Region 9: Macomb County

The forum in Kalamazoo was postponed in January 2014 until April 2014:

INTEGRATED CARE

SAVE THE DATE: Integrated Care Implementation Forum - Rescheduled for Kalamazoo

Dear Stakeholder:

The Michigan Department of Community Health (MDCH) will be hosting a public forum on the state’s plan to integrate care for individuals who are dually eligible for Medicare and Medicaid on April 8, 2014 at the Radisson Plaza Hotel and Suites, located at 100 W. Michigan Avenue in Kalamazoo.  The forum will be held in the Arcadia Ballroom located on the main level from 10:00 a.m. to 12:00 noon EST.

MDCH is providing a conference line for interested stakeholders to participate by phone.  The conference line information is also posted on the Integrated Care website.

Call-in number: 888-363-4734
Access number: 4162210

There are 250 lines available on a first come first served basis.  We encourage organizations to listen in groups in order to maximize lines available for others.  If you get a message stating “Please try your call again later”, all lines are full.

Prior to the forum, the presentation will be available on the Integrated Care website .

A local map to the Radisson Plaza Hotel and Suites can be found here: 

The address for personal GPS and online mapping systems is:

100 W. Michigan Avenue, Kalamazoo, MI 49007

Parking is available in the hotel’s attached parking garage. Green parking passes will be available at the forum registration table to cover the cost of parking for participants.  When leaving the parking garage, enter your parking ticket into the machine followed by the green parking pass to avoid a parking fee.

Complimentary valet parking is available to those utilizing wheelchairs or with accessibility/mobility issues.

For interpreting services, or other accommodations at the forum, contact the Integrated Care Division at 517-241-4293.

Navigating Health Care Reform

Prickly Hearts

We are fortunate in not having to deal with changing health insurance. Our sons have been covered by Medicaid since they were 18 years old in a Medicaid friendly part of Michigan. Medicaid also pays for the services they need as developmentally disabled adults. Medicaid expansion should help more children and adults with disabilities qualify for mental health services if they have mental illness or  DD.

Last Sunday, 3/23/14, The Detroit Free Press published a whole section on navigating health care reform with about 50 links to articles on just about every topic concerning the Affordable Care Act and obtaining health insurance you could imagine. Here is the introduction to the On-Line version of the DFP's special health care section:

Are you ready?
 
The most contentious piece of federal health reform legislation – a requirement that every person have health insurance by next year or face tax penalties – has begun. It is officially named the Patient Protection and Affordable Care Act, although some groups refer to the legislation as just the Affordable Care Act, ACA or "Obamacare." The enrollment period began October 1 and runs through March 31. Many Michigan residents will be able to buy insurance through the Michigan Health Insurance Marketplace, an online exchange where the coverage may be more affordable. If you have questions, let us know and we'll try to find answers. Write: healthreform@freepress.com.

Good luck to those who have not yet signed up for a workable health insurance policy.

Polite Canadians take a vote on winter

Community Choice Coalition letter to CMS on new HCBS Rule

The Community Choice Coalition (CCC) is a national coalition of organizations supporting increased housing options for people with disabilities. The CCC has written a letter to Marilynn Tavenner at the Centers for Medicare and Medicaid Services regarding the recent Home and Community Based Services Setting Final Rule (CMS 2249-F/2296-F) expressing its support of a broad range of housing options to solve the national housing crisis for people with disabilities. The letter is signed by JaLynn Prince, the President of the Madison House Autism Foundation in Rockville, Maryland, and 41 other organizations from around the country. Madison House Foundation is a public 501(c) (3) national organization working to eliminate barriers and increase opportunities for the rapidly growing numbers of adults with autism.

This is the body of the letter that was sent on March 4, 2014:  

Dear Administrator Tavenner:

Madison House Autism Foundation and the supporting signatories offer appreciation of the earnest effort to balance many perspectives in your consideration of Home and Community Based Services (HCBS) Settings Final Rule (CMS 2249-F/2296-F).

We were pleased to see that CMS is moving toward valuing the individual’s choice and experience of home and community as described:

"In this final rule, CMS is moving away from defining home and community-based settings by ‘what they are not,’ and toward defining them by the nature and quality of individuals’ experiences. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics." [Page 1, Summary of Key Provisions in the HCBS Setting Final Rule]

The process of public comments brought together many like-minded stakeholders who desire and support a full array of housing choices. These voices are no longer fragmented. We have united to establish the Coalition for Community Choice (CCC) and today, I am writing on our behalf. The Coalition for Community Choice believes people with disabilities should have the broadest range of affordable and accessible housing options, and we encourage the formation of public-private partnerships to create local solutions for the national housing crisis.

We look forward to ongoing opportunities to work with CMS to offer more affordable and accessible housing options that meet the needs of such diverse populations. We are happy to provide information or insight to the issues that many people with intellectual and other developmental disabilities and their families face. To that end, CCC expressly requests the opportunity to review proposed State Guidance Letters and provide input before publication.

Thank you again for your efforts to consider so carefully all stakeholdre input, and for the robust public comment opportunities at the state and federal levels that remain part of the Final Rule. We sincerely hope that CMS will continue to welcome public input as Guidance letters are drafted.

Sincerely,

JaLynn Prince, President and Co-Founder
Madison House Autism Foundation 

***************************************************
The letter is co-signed by representatives of 6 national organizations and 35 other organizations from Arizona, California, Colorado, Delaware, District of Columbia, Florida, Maryland, Massachusetts, Michigan, Nevada, New Hampshire, North Carolina,  Ohio, Texas, Virginia, Washington, and West Virginia.

VOR: Refusing to redefine individual choice

This is from featured news on the National Autism Network website:
  
Meet VOR: An organization that unites by refusing to redefine individual choice

Mar 04 2014

By Tamie Hopp, VOR Director of Government Relations & Advocacy

I am delighted to have this opportunity to introduce you to VOR, an organization that is really like none other.

VOR is a national, nonprofit organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

We are the only national advocacy organization that has not redefined terms that other disability advocates have hijacked, like “choice” and “community.” 

For 30 years, VOR has remained true to the families we represent by putting their seasoned insights and perspectives first. To us and them, “choice” really means choice. Our advocacy is driven and guided by an undeniable truth: Individuals and their families know best.

To get to know VOR even better, we are offering a complimentary e-subscription to our publications through June 2015, no strings attached, including our weekly VOR E-News Update and our newsletter, The Voice, published three times a year. Just send your email address to info@vor.net with your request. Your email will never be shared or sold.

You will find VOR unique and refreshing in this day and age of advocacy. We respect individual differences, and reject “broad brush” policies that apply to most individuals with disabilities, but not all.  In our view, such an “all or nothing” approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk.

VOR’s advocacy – our walk to support our talk – is carried out at the state and federal levels by an army of members and volunteers, the vast majority of whom have family members with profound cognitive disabilities.

In state houses, court rooms, Congress and the media, we are doing all we can to help change the conversation away from ideological notions of what is best for all people with developmental disabilities, to what each individual needs.  We challenge laws, seek reforms and help families.

In short, VOR is doing all we can to answer what “Autism Daddy” says is the question many parents of autistic children and adults are afraid to ask, “Where Will He Live When We're Gone?”

VOR demands realistic answers to this question by working to ensure that the system is responsive to all needs, and working in coalition to expand housing and vocational options and challenging efforts at all levels, including our federal government, to eliminate specialized residential, vocation, and support services.

The need is significant. 3.5 million people with I/DD and autism are living with family caregivers (many who are elderly), there have been less than a quarter million out-of‐home residential opportunities funded in nearly 20 years,  and 268,000 Americans with I/DD are on waiting lists for services.

Does it make sense to eliminate specialized service options for people with profound needs because of someone else’s notion of “inclusion” and “community?”

VOR’s vision of the world puts individuals and their families in the driver’s seat, not federally-funded advocates that attempt to speak for you and your family.

VOR is 100% privately –funded, supported entirely by our members, primarily families like you.

We invite you to learn more about VOR at www.vor.net; and don’t forget out our complimentary subscription offer (to get signed up, send your request to info@vor.net).

The more advocates we have speaking up in support of individual rights, family rights and common sense, the more successful we will be.

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About the National Autism Network:

The National Autism Network is the largest online resource for the autism community providing a social network, nationwide provider directory, events calendar, discussion forums, autism news, expert written content and thousands of resources. Our mission is to unite and empower parents, providers, family members and individuals on the autism spectrum by providing a growing community rich in knowledge and expertise with a common goal of working together to make a difference in the lives of those affected by autism. We are all in this together as one community!