Monday, March 2, 2015

Texas: Home in a caring community

From the Coalition for Community Choice Blog - "When Mom’s Plans Aren’t Enough", 12/9/14

Pam’s mother promised that Pam would be able to stay in her family home and continue her existing lifestyle even when her mother was no longer around. Upon her mother’s death, Pam was fortunate to have siblings that were prepared to interview, hire, and manage the direct support staff Pam needed. The goal for Pam was for her to live as independently as possible in her family home with her beloved dog, “Rachel”.

Unfortunately, things did not go as Pam’s mother may have wanted. Although Pam was able to stay in her family home with 24/7 support staff, something was missing. The staff cared for Pam physically, however her greater potential was not being realized within the daily monotony of television programming and routine meals.

In facing the difficult decision as to whether or not to go against her mother’s wishes, Jan explored alternative living situations for her sister. She discovered Live Oak Living, an intentional community where 16 residents with traumatic brain injuries or developmental disabilities live. When Pam expressed anxiety towards her life ahead at Live Oak, the community made special accommodations to ease her transition including constructing a fenced in yard for “Rachel”. Pam moved into her own studio to start her new life in a community that embraces individual choice and is encultured with person-centered support. 

Now, Pam can stroll over to a friends house, attend classes if she desires, or simply go for a walk with “Rachel” to visit her new equine friends. Pam described a shopping trip with her sister, and though she missed going to see Captain America, she returned just in time for “Girls Night” that evening!

After the interview, one of the staff members suggested that Pam put in an application to work at the bakery down the street. In noting Pam’s initial reluctance, the staff reminded her of her delicious cheese pimento, which was just enough moral support to help Pam consider a new employment possibility.

More links:

The Coalition for Community Choice

Madison House Autism Foundation

Sunday, March 1, 2015

Use it or lose it: Allowing more community use of a facility for DD is less costly than closing it down

The argument being made to close Southbury Training School in Connecticut, an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID), is the same faulty argument being made in Michigan to justify closing programs that provide residential, employment, and day program options in congregate settings. It goes like this: When compared to the average cost of serving individuals in the community, congregate settings are far too expensive — close them down and there will be plenty of money left over to serve more people with disabilities!

Often overlooked in this calculation, is the fact that the people served in licensed congregate settings generally have more severe disabilities and need more specialized services than people living at home or in the so-called community. When people with highly specialized needs are served in community settings, it can be just as costly if not more costly than in group settings. In reality, costs savings often come as a price to people with disabilities and their families in the form of fewer services of lower quality.  

Comparing the average cost of supporting people who require less intensive supports in the community to the cost of supporting distinctly non-average individuals who need more intensive supports and services is not a fair or accurate comparison. While costs should not be the only consideration for where and how a person with DD is served, it is inevitably raised as a factor by disability advocates who try to justify eliminating programs that do not conform to their ideology of full inclusion for every person with a disability. 

The following are excerpts from an editorial that appeared in the Hartford Courant on 2/20/15: “Using Southbury Training School Is Only Real Solution” by Martha Dwyer and Tamie Hopp. Martha Dwyer is president of the nonprofit Home and School Association of the Southbury Training School. Tamie Hopp is director of government relations and advocacy for VOR, a national nonprofit that represents primarily individuals with intellectual disabilities and their families/guardians.

There is a crisis in the care of people with intellectual and developmental disabilities in Connecticut. At least 2,000 individuals who are living with their families are on the waiting list for placement in a residence, many for more than 20 years and many in desperate situations. [emphasis added] 

Many people believe that closing Southbury Training School and the state regional centers and moving residents to four-person (or smaller) group homes will free up funds to enable individuals on the waiting list to be placed in residences. This is incorrect and will create more problems than it will solve...

The numbers don't add up. There are approximately 313 individuals at Southbury and 191 at regional centers. At least 125 new group homes would have to be renovated and staffed to provide highly specialized services for these individuals. Moving a resident of Southbury to the community generally takes one to two years, and this during periods when only a few residents are moved at a time. To move 500 people would take years and a huge amount of money. Residents at Southbury and regional centers have been given priority over people on the waiting list for years and that would have to continue indefinitely to close Southbury and the regional centers. That would help no one on the waiting list for many years.

…Seventy-eight percent of Southbury residents have severe or profound intellectual disabilities, the vast majority have significant functional disabilities (a majority need help walking, eating, toileting, or dressing), and 83 percent have additional disabilities such as cerebral palsy, blindness, deafness, epilepsy or mental illness...they do not live in a segregated environment but interact on a frequent basis, to the extent they physically and intellectually can, with people in the community. They will be moved from their familiar surroundings and they will be exposed to a smaller group of unfamiliar people...

There is a better, more comprehensive solution that no one is talking about: Open Southbury and the regional centers for future placements and use Southbury for outpatient services and skilled nursing care for aged members of this population and respite services for families. Repairing and reopening cottages on the Southbury campus and using available regional center beds would be less expensive and faster than seeking homes in the community for individuals on the waiting list.

… The state should expand the sophisticated medical, dental and psychiatric facilities already in use at Southbury and make them available to people on the waiting list and in the community. It would make more sense to use the facilities the state already owns, and thereby bring down individual costs, than to waste this beautiful resource. We believe this would save money and improve service throughout the state.

...Southbury is a ready, compassionate solution centered on meeting people's true needs, not a numbers game that simply does not add up.

Read the complete editorial here....

Friday, February 20, 2015

New Jersey: Not Happy with HCBS Transition Plan

This is from a good autism blog, Inspectrum: Reports from the world of severe autism by Amy S. Lutz. Amy attended two public comment sessions on the state's HCBS Transition Plan at the New Jersey Department of Developmental Disabilities. She estimated that approximately 50 people spoke, but only two were in favor of the plan:

"These opponents were a diverse group, including individuals with developmental disabilities, parents, siblings, providers, and advocates. But certain themes emerged:
    •    "That perhaps the state had not acted in good faith by failing to notify present and potential waiver recipients of the proposed changes by letter or email blast; by scheduling the first of only two public comment sessions the day after the plan was released, before stakeholders really had a chance to wade through it (that session fortunately had to be rescheduled due to snow); by organizing far fewer opportunities for public comment than other states; and by overall neglecting to solicit the input of individuals with disabilities, their families, and the providers that serve them before crafting the regulations in the first place
    •    "That New Jersey’s plan to exclude congregate settings serving more than six people and to mandate that no more than 25% of the units in all apartment buildings and communities be occupied by waiver recipients unfairly precludes individuals with disabilities from choosing to live wherever and with whomever they please – a right freely enjoyed by those of us without disabilities
    •    "That the proposed requirement that day program recipients spend 75% of their time offsite in the community is expensive and impractical – particularly for those with severe medical and behavioral challenges
    •    "That countless individuals, finally thriving on campuses, farmsteads, or sheltered workshops, would be needlessly uprooted (“It took me 18 years to find the right program for my daughter,” one mom stated. “I’m 72 years old – I don’t have another 18 years.”

Read more here...

Assessing Settings for HCBS compliance: MI Surveys Fall Short

February 20, 2015, is the due date for comments on Michigan’s proposed assessment tools for determining whether settings that use Medicaid Waiver funding comply with the federal Home and Community-Based Services (HCBS) settings rule. The plan is to send surveys to residents, service providers, and Prepaid Inpatient Health Plans (PIHPs) [regional mental health agencies] to determine whether settings are sufficiently integrated into “the community” to meet the new standard. 

The Michigan plan to assess compliance with the HCBS settings rule falls short in the same way that the HCBS rule itself falls short: it leads to arbitrary standards that at their core have little to do with the needs of individual recipients of services (people with developmental and other disabilities) and more to do with pressuring states and local agencies to eliminate Medicaid-funded congregate care (specialized services provided to people with disabilities in group settings.) We know this for a fact because of earlier versions of the HCBS rule that explicitly sought to disqualify most congregate settings, based on the number of participants and whether they served only people with disabilities. 

Because of the uproar caused by the proposed HCBS rule before it was issued in its final form, the Centers for Medicare and Medicaid Services (CMS) backed down on the more arbitrary  aspects of the rule. This has not stopped federally-funded disability rights and advocacy groups from misrepresenting the final rule as a mandate to eliminate congregate care and to shift funding to services and settings that are more in tune with their ideological world view.

For a long time, federally-funded disability rights and advocacy groups and some federal agencies have been misinterpreting federal mandates that protect individual rights to appropriate services. To counteract this, the state needs to provide information along with the surveys that assure individuals and their families, services providers, and local agencies that the surveys are not going to result in the wholesale elimination of services and settings that many people with disabilities need. Otherwise, there is a danger that service providers will bail out of providing necessary services because they fear confrontation with the federal and state government and with federally funded advocates. As a parent, I can think of nothing more panic inducing than being asked to fill out forms that appear to be designed to remove my adult children from service settings that they need and rely on.

A Cover Letter should accompany the survey that includes accurate and complete information about the HCBS rule so that individuals, providers of services, and agencies are better informed of their rights to services in the most integrated setting appropriate to their individual needs.

The Cover Letter

To begin with, the cover letter should include this paragraph from page one of the Summary of Key Provisions in the HCBS settings Final Rule:

“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."

Along with the HCBS settings rule, the state must take into account individuals who may need separate services or residential options. The ADA and the 1999 Supreme Court Olmstead decision do not rule out this possibility. There are many medically necessary services that people with the most severe disabilities and behavioral challenges need for survival that cannot be provided safely or reasonably in a non-congregate setting. 

Clarify that the setting, or rather the provider of services in a particular setting, is not always responsible for an individual’s lack of involvement in “the community”. There is usually a shared responsibility between service providers, agencies, and families to assure that individuals have the supports they need to be involved in their communities to the extent appropriate, based on their needs and preferences. The specifics of how this will be accomplished should be included in the individual’s person-centered plan and Individual Plan of Service.

People responding to the surveys should also be directed to the document from the Centers for Medicare and Medicaid Services (CMS) on “…Questions and answers Regarding Home and Community-Based Settings It is clear from this document that, for the most part, there are no settings that are automatically excluded from using HCBS funding, although there must be evidence that supports compliance with the rule. In other words, there are no right or wrong answers to the questions.

Clarify that the HCBS rule does not change the authority of court-appointed guardians, most of whom are family members or close friends of the individual. Guardians continue to make decisions on behalf of their wards as provided by state law. Many of the questions, especially those having to do with whether the individual has been informed of his or her rights, should make clear that when the person has a legal guardian, the guardian must be informed. 

There are terms used in the surveys, some that are not defined in the HCBS rule, that need to be clarified for individuals and providers in order to respond to the surveys. How does the state define “community” and “access”? What does it mean for an individual to have “access to the same set of community options as people who do not receive services through these waivers”? What is an “institutional treatment option”?  What is considered a “secure environment”? There are many terms that may be familiar to professionals in government, but are not universally understood by families and providers.

Providers and individuals should also know that the HCBS rule does not require full implementation until March 2019. Even if a state finds a setting out of compliance with the rule, it can continue to use HCBS funding until that date.

Clarify “the right to disagree”. There is no mention of an appeals process for either individuals or providers who disagree with the findings of the state. This is a significant omission and should be included in a cover letter to those answering the surveys for them to have sufficient information about their right to disagree with the state assessments.

There should also be a reminder that the State Transition Plan allows time for remediation of non-compliant settings.  This process will continue through September 2018.

Do not allow the state implementation of the the HCBS rule to eliminate the option of planned or intentional communities. Some of the most innovative and family-friendly projects in recent years, including intentional communities for housing people with disabilities, have been developed partly with the use of waiver funding. Because of the flexibility of the waiver funding and the ability to individualize services and choice, these projects offer a significant improvement in the quality of life for many individuals and their families. Unfortunately, some of these communities have been under attack by federally funded advocacy groups that use a misinterpretation of the HCBS rule and Olmstead to promote elimination of these options. The state has a responsibility to make sure this does not happen in Michigan. 

Thursday, February 12, 2015

Homelessness in Ann Arbor by the numbers

We know these are not just numbers, but human beings who don’t have a permanent place to call home with some of them inhabiting places that “are unfit for human habitation”. The weather forecast for 2/14/15 predicts snow showers, a high of 23 degrees, and a low of -10 degrees. Something to think about as we celebrate Valentine’s Day.

A report in the Ann Arbor News, "By the numbers: A quick look at the Ann Arbor area's homeless population" by Ryan Stanton, 2/11/15/, shows the results of two surveys of the homeless population in Washtenaw County, Michigan. A snap-shot survey required by HUD (the U.S. Department of Housing and Urban Development) showed 387 people were homeless on January 28, 2015. The second survey is part of a national campaign to end veteran homelessness by the end of 2015 and chronic homelessness by 2016. It includes more data and shows larger numbers than the first survey.

Here are figures I selected from the HUD survey that show the number of homeless people according to their various vulnerabilities, including chronic health problems and mental illness:
  • 307: The number of homeless people who were found in shelters or transitional housing on the day of the count.
  • 80: The number of homeless people found on the streets or in other places not meant for human habitation, including camp sites.
  • 24: The number of sheltered veterans; 5: The number of unsheltered veterans.
  • 53: The number of sheltered people with a severe mental illness; 41: The number of unsheltered people with a severe mental illness.
  • 23: The number of sheltered people with a chronic substance abuse problem; 21: The number of unsheltered people with a chronic substance abuse problem.
The Zero: 2016 surveys provide additional data on people with chronic health and mental illness and other vulnerabilities:
  • 334: The total number of homeless people surveyed.
  • 224: The number of homeless people who were identified as being particularly vulnerable; 20 percent reported being violently attacked since becoming homeless and 25 percent reported being homeless for more than two years.
  • 350: The number of emergency room visits in the past six months among the people surveyed; 174: The number of hospitalizations in the past six months; 115: The number of ambulance transports to the hospital in the past six months; 49: The number of people who indicated they've had three or more ER visits in the past six months.
  • 165: The number of people who reported chronic health conditions; 243: The number of people who reported mental health conditions; 176: The number of people who reported substance use issues.
  • 88: The number of people who reported all three: mental health, substance use and chronic health conditions. 
  • 37: The percentage of chronically homeless people who reported all three: mental health, substance use and chronic health conditions. 

Monday, February 2, 2015

Wisconsin letter to CMS: continued choice for employment and day services

Family advocates in Wisconsin spent months appealing to the state to continue to ensure choice and the availability of a full array of options for non-residential settings, including sheltered workshops. After the CMS issued its clarification of the new HCBS Rule on the subject, the Wisconsin Department of Health Services wrote a letter to the CMS with its decision to continue to assure a full array of available non-residential settings and choice.

The letter stated that, 

"Sheltered workshops have provided services and resources to individuals and families for years. They provide assistance in developing work skills that help people move into employment across the state. We believe that sheltered workshops provide services that are vital to the individuals and families who depend on them and should remain part of Wisconsin’s robust efforts to help people with intellectual disabilities gain employment. We understand that it is an allowable choice for people to receive employment services in a sheltered workshop setting under Wisconsin’s approved waivers. 

"We have now reviewed the home and community-based non-residential settings guidance that CMS issued on December 15, 2014. Based on this new guidance, which continues to emphasize individual rights and choices, Wisconsin will continue to offer our most vulnerable residents a choice of settings for employment (both competitive and non-competitive) and day services. As CMS has indicated, the setting chosen by the person may depend on whether he/she requires services that are highly clinical or medical in nature or he/she has competitive employment goals."

This shows what is possible under the new rule and that it does not necessarily portend the closing of all congregate (group) settings, as many advocacy organizations pushing for closure would have us believe.

CMS: The new HCBS rule and State Assessments for Non-Residential Settings

The federal Centers for Medicare and Medicaid Services (CMS) issued a set of “Exploratory Questions to Assist States in Assessment of Non-Residential Home and Community-Based Service (HCBS) Settings". These are similar to the Exploratory Questions for Residential Settings also issued by the CMS. These questions apply to programs such as sheltered (center-based) work programs, day habilitation programs, pre-vocational programs, etc.

According to the document, its purpose " to offer considerations for states as they assess whether non-residential settings meet the Medicaid HCB settings requirements. The optional questions for non-residential settings are organized by each HCB setting regulation requirement… These questions serve as suggestions to assist states and stakeholders in understanding what indicators might reflect the presence or absence of each quality in a setting. These questions are not designed to be a score sheet and not all questions relate to every HCBS or every individual served….”

It goes on to say that, “In some cases, especially when the service provided is highly clinical/medical in nature, e.g., medical adult day programs, the nature of the service will impact how the state addresses the HCB settings requirements. The state’s determinations about these settings and the extent to which changes in the settings are necessary to comply with the requirements may be different than state decisions/actions for a setting that is less medical/clinical in nature.

“States should consider carefully the extent to which settings compliance is met due to the nature of the service and/or the HCB qualities. For example, for individuals seeking supports for competitive employment, the state should consider whether the right service is being appropriately provided to achieve its goal...or whether the provision of a different type of service would more fully achieve competitive employment in an integrated setting for the individual, in addition to whether the setting meets the HCB settings requirements. Or, in another example, a service that is primarily rehabilitative (offers physical, speech, occupational and other therapies), but also offers respite to family caregivers, may be short-term in duration and requires by definition that all participants have a disability. Another type of service may be designed to primarily offer personal care, social recreational supports and respite for family caregivers, and is more long-term in duration. The manner in which each of these services meets the HCB settings requirements may vary. [emphasis added]

There are no “right” answers to the questions and no specific characteristics of a non-residential setting that automatically disqualifies a setting from being considered appropriate for an individual  with a developmental or other disability. It is useful to read through the questions - they may alert you to possibilities that you had not considered before. For instance, the questions concerning “an individual’s rights of privacy, dignity, and respect, and freedom from coercion and restraint. 42 CFR 441.301(c)(4)(iii)/ 441.710(a)(1)(iii)/441.530(a)(1)(iii)...", would apply to any setting and offer an opportunity to correct deficiencies in this area, wherever the individual receives services.

The problem with the HCB settings rule is that it does not emphasize or restate part of the Americans with Disabilities Act referring to individual need. The ADA and its regulations require these three things that are especially relevant to determining where a person lives or receives services: 

  • No qualified individual with a disability shall, on the basis of disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any public entity.
  • A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.
  • Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept.
The HCB settings rule and its varying interpretations do not change the requirements of the ADA.

The Community Choice Coalition has information on State Transition Plans and what you can do to assure choice and that states maintain a full array of residential and service options.

This website has links to documents on the final HCBS Rule and clarifications from CMS.