Public comment needed on Medicaid waiver programs

This is an action alert notice from the Coalition for Community Choice (CCC):

PUBLIC COMMENT DEADLINE:

JANUARY 9, 2016 @ 5:00 PM EST

The Center for Medicare and Medicaid Services (CMS) is the federal entity in charge of funding and regulating all support services for adults with autism and other developmental disabilities. CMS is requesting public comment specifically on waiver programs across the country:  “to accelerate the provision of home and community-based services (HCBS) to Medicaid beneficiaries taking into account issues affecting beneficiary choice and control, program integrity, rate setting, quality infrastructure, and the home care workforce.” 

As individuals navigating and using this complex system, your voices are critical. This is an important opportunity to share information with those who control how the Medicaid system functions. CMS requests concise answers to the following questions: 

• What are the additional reforms that CMS can take to accelerate the progress of access to HCBS and achieve an appropriate balance of HCBS and institutional services in the Medicaid long-term services and supports (LTSS) system to meet the needs and preferences of beneficiaries?
• What actions can CMS take, independently or in partnership with states and stakeholders, to ensure quality of HCBS including beneficiary health and safety?
• What program integrity safeguards should states have in place to ensure beneficiary safety and reduce fraud, waste, and abuse in HCBS?
• What are specific steps CMS could take to strengthen the HCBS home care workforce, including establishing requirements, standards or procedures to ensure rates paid to home care providers are sufficient to attract enough providers to meet service needs of beneficiaries and that wages supported by those rates are sufficient to attract enough qualified home care workers?

To see further questions posed by CMS within the broader questions above, review this section of the document.

HOW TO SUBMIT YOUR COMMENT: Send your comments electronically (click here) or mail them to this address:

Centers for Medicare and Medicaid Services, Department of Health and Human Services, Attention: CMS-2404-NC
P.O. Box 8013
Baltimore, MD 21244-8013

IMPORTANT NOTE: You do not have to answer every question above. Do not spend more than a paragraph describing yourself or your loved one with a disability. Instead, focus on system barriers you have encountered and changes that can improve access to services. Please be aware that all submissions will be publicly available to read. CMS will not answer questions raised during this public comment period but may reach out for clarification of your comment in the future. Directions on how to submit one’s public comment as well as additional information on this request for information can be found here.

Funding and the availability of support services for I/DD are not keeping up with the demand

4,902,835 with Intellectual and Developmental Disabilities (I/DD) in USA

1,389,611 supported in an out-of-home residential setting

852,923 individuals living with a caregiver 60 years or older

244,195 residential placements funded from 1994 - 2011

Excerpts from the Madison House Autism Foundation (MHAF), "5 Things You Need to Know about Disability Housing and Advocacy" by Desiree Kameka:

Funding for support services for adults with autism and other I/DD is not keeping up with the demand

States are hoping that families will continue to support their loved ones with disabilities until they no longer can, but delaying assistance until a crisis or death occurs should not be the only option. Parents are often forced to leave the workforce, and adults with I/DD are not given opportunities to grow by leaving the nest. In the best situations, adults with I/DD are content at home but become increasingly dependent on an aging family caregiver; in the worst situations, they are stuck in an abusive and isolated home as states assume that living with one’s family is the best option for everyone. States may even offer financial support to keep an adult with I/DD in his family home. It is essential that people have access to public funding for the supports and services they require to live in a setting outside of the family home. The graphic [above] shows the enormous need for housing alongside the actual growth of residential support.

Check out your State Profile from the State of the States in Developmental Disabilities, a study that has tracked data for more than 35 years. To find residential trends in your state click here.

...

Government officials do not hear from everyday families nor recipients of publicly funded supports services with I/DD, and this impacts future housing and support choices

Who is talking to CMS or other policymakers as they develop regulations? The most prominent voices today are paid, professional advocates in the DC-metro area. These paid advocates schedule meetings, create statements, attend government events and hearings, and sit on various task forces made up of others in the same circles. While their policy recommendations may make sense from an ideological standpoint, these ideas are often unrealistic in implementation and lacks generalizability when considering the diverse needs and preferences of individuals who utilize waivers. For example, CMS regulations on HCBS waivers requires waiver recipients to come and go from their house at any time. This is an important right for many people, but implementation of this regulation without additional funding for the wide array of waiver recipients makes the regulation simply words on paper.

Let me illustrate: For an autistic adult who can not identify the difference between his front yard and the street, leaving the house without support staff is unsafe and may put that person at risk of being hit by a car. Reimbursement of support staff may allow for only one staff person to support three individuals living in the house. Following CMS regulations, if the staff member is required to accompany one of the housemates on a walk, the two remaining housemates would be left unsupervised at home. If these housemates lived in a pedestrian-oriented gated-community, they could all walk freely in their neighborhood as cars are intentionally restricted. Unfortunately, a neighborhood of this design would be considered isolating by CMS’s standard.

See also the Coalition for Community Choice

Read the full article here

Madison House Autism Foundation comments on the future of services to adults with autism

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The Committee met at the NIH headquarters on July 19, 2016 to discuss business, updates, and issues related to autism research activities. Madison House Autism Foundation (MHAF) Executive Director, Adrienne McBride, delivered public comments on behalf of MHAF. Her powerful speech called for more “creative action” on a Federal level and service delivery models that better support adults living with autism. Watch her speech in the video above.

This is from the latest issue of the Madison House Autism Foundation newsletter. Other items of interest especially for those interested in housing for adults with autism include an article on "5 Reasons Why Autistic Adults Should Consider Tiny Homes" and more information about the MHAF rural housing project, Madison Fields.

See also information about the national HCBS Conference on 8/29/16 in Washington, D.C.

New Jersey attorney and parent speaks in defense of campus settings for ID/DD

Lisa Parles Speaking at the 2015 EASI Foundation and Families CCAN Conference

Lisa Parles, is a New Jersey attorney and the parent of a young man with severe autism. On October 15, 2015, speaking at a housing conference in Philadelphia, she gave an eloquent talk in defense of campus settings for people with intellectual and developmental disabilities. Her son Andrew lives in the Bancroft Lakeside community in Gloucester County, New Jersey.

Lisa Parles’ son went through a regression at the age of 19, something that is not uncommon among teenagers with severe autism and other developmental disabilities. At the time, he lost his ability to speak, had severe self injurious behaviors, and did not sleep for days on end. There are many people like Andrew that most people do not like to talk about, but Parles believes parents need to speak up about their children so that services necessary to help them will be available.

She believes that the campus setting with a full array of services on campus is a clinically superior model for a vast number of individuals affected with developmental disabilities. It provides economy of scale (more resources concentrated in one place serving more people at less cost per person), more flexibility for the individual and staff, on-campus resources for people who cannot leave the area without being harmed or causing harm to others, behavioral and nursing services available when needed, and a greater sense of family and community than is found in many smaller settings.

More from Lisa Parles:

The federal Home and Community-Based Services (HCBS) rule assumes measures of “success” that can actually be harmful for some people with severe DD: having access to food whenever one wants, being able to choose a roommate, having the freedom to come and go as one pleases, living at home vs. living in a group setting, to name a few.  Parles responds by saying, “[for] some people.. access to the refrigerator is eating until they die. A key to the house means elopement and [being] hit by something in the street. choosing a roommate is not an option because for my son he can’t have a roommate. When my son doesn’t sleep for two days, he almost can’t have a housemate.”

On the relatively high cost of maintaining someone in a congregate setting compared to another person living at home with one's family, she says, not only is living at home not possible for many with the most severe disabilities, but “Sometimes what it costs is what someone needs. So to say we can do twenty people in a home situation for the price of one in my view its the equivalent of saying we can give out a thousand bandaids or one surgery. When you need the surgery, the number of bandaids don’t count.”

On redefining “success”: “The direction we’re going…who’s getting to define what a community is, who’s getting to define what success is? They’re on the wrong path.”

Madison House Autism Foundation: Tour a community of 40 Neighbors with I/DD

From the Madison House Autism Foundation (MHAF). Follow this link to watch the video and see photographs of this amazing community:

By Desiree Kameka

In 2013, in the middle of a New Jersey suburb, a small apartment building was built to offer a supportive housing options to about 40 residents with intellectual/developmental disabilities (I/DD). Those who live there choose from either a one bedroom or two bedroom unit each with a living room, spacious bathroom, a small kitchenette, cable, internet, and telephone. There is no set schedule for any resident; some residents have jobs in the community, others volunteer with local charities or are working with vocational rehab to access employment opportunities. Residents live the life they want to live and go about their day with self-directed supports as needed.

As a resident of Mt. Bethel Village, one has the option to attend a day program in the community that can act as a stable support system or a safety net when job or volunteer options cannot fill one’s day. Mt. Bethel Village also includes an art studio, a gym, a library, a pool/ping pong tables, a dining area, and a community room with flat screen TVs and gaming consoles. Other amenities include transportation, an on-site nurse for medical management and referrals, housekeeping and/or laundry services, meal plans as desired, a receptionist, and 24-7 support staff as needed. When I visited Mt. Bethel Village, I had the opportunity to ask many residents why they liked living there. Most said things along the lines of, “I can be independent,” and “I have lots of friends.” Watch the video below to hear what residents think about their choice to move to Mt. Bethel Village. 

Mt. Bethel Village is currently home to about 30 residents with I/DD.  All of them have complete financial support of their family and can privately pay for their supportive housing apartment at a cost of at least $4,200 a month. One of the founders of Mt. Bethel Village used to be a direct support professional at a skilled nursing facility, having seen the dehumanization of people and their struggle to become completely dependant on others, he knew a better way of supportive living was possible. Herb eventually became the President and CEO of a senior assisted living community company.  

Mt. Bethel Village could be for only those who could private pay, but Herb would not allow that to happen. In the spirit of equity, and having a long list of hopeful individuals that could not move to Mt. Bethel Village without state support, they have fought to become an approved agency with the NJ Dept. of Human Services’ Division of Developmental Disabilities, their state Medicaid authority.

At the time of my visit in October 2015, the nine individuals who had been identified as a good fit had been waiting for over 10 months for the green light to move in, three of them are still waiting. While the majority of Mt. Bethel Village residents live in their own one or two bedroom apartment, those who access public funding must live in a three bedroom units. In order for these residents to move in, Mt. Bethel Village used their own funding to remove the walls from existing one and two bedroom units to accommodate the state mandate that three persons must live in an apartment. Considering over 26,000 individuals with I/DD in NJ are living with a family caregiver over the age of 60, and funding for an out-of home placement has only grown by about 3,000 in almost two decades, New Jersey should be doing everything in its power to ensure they will have the housing and supports needed for those who may soon lose their parents and be forcefully institutionalized for lack of options.

Mt. Bethel Village does not operate nor look like a typical apartment building, but more of a college dormitory or assisted living community with much more interaction among neighbors than a typical apartment complex. I can see how this can be confusing for the state to try and put it in an already preconceived settings checkbox, but just because it does not fit any of the current models of housing and may offer different kinds of amenities and built-in supports does not mean it’s institutional. For example, despite having private kitchens in every unit and the transportation with supports to go grocery shopping, most residents rarely decide to cook and prefer to have their meals in communal dining areas. Mt. Bethel Village has two chefs who offer several meal selections, oftentimes featuring at least one person’s favorite meal (the chefs know and request favorite dishes from residents). I had a delicious chicken tortilla soup with shrimp scampi during my visit. On the weekends, while some choose to go out to eat or visit family, others prefer to enjoy the family style dinner at Mt. Bethel. Having a common dining area has been described as a characteristic of an institutional setting by state and federal policymakers, but that seems unfair if residents have the choice and prefer not to plan, prepare, and eat in their apartment. Having a meal plan is a viable option and may improve quality of life for those whom going to the grocery store and planning meals is a stressful event. It offers a social outlet for those who would prefer not to eat alone in their apartment and offers a healthy alternative to the typical microwave dinners that many who don’t like or want to cook use for convenience.

Living in an intentional community provides the space to create a culture of access and neurodiverse leadership. Residents at Mt. Bethel Village have weekly opportunities to sit with the Executive Director, Carolann Garafola, to discuss community concerns and jointly plan solutions. Another fun culture-building initiative came from residents starting to host “Open House” events in their apartment where they create invitations, plan activities around a theme, prepare food and refreshments for their party guests, and of course, clean up after the party is over. Mt. Bethel Village offers a 2 week respite session that would give you the chance to really understand the benefits and considerations of living in an apartment building built specifically to meet the housing and support needs of peers with intellectual / developmental disabilities. Living in such a close-knit and socially stimulating environment may be too much for those who are not social butterflies, but of course one can always retreat into their own apartment as needed. Despite many residents telling me that their move occurred because their parents were sick or had passed away, my conversations with so many residents were full of joy, excitement, and pride in their home and life at Mt. Bethel Village.

All in all, to describe Mt. Bethel Village as institutional, a congregate facility, or isolating just because 40 individuals with I/DD live there is not only inaccurate but a gross disregard for their preferred home choice. When asked what he would change about living at Mt. Bethel Village, the young man in the video did not say, “We need more time in the greater community” or “more neurotypicals to be a better integrated setting.” He declared with enthusiasm that he wanted more friends to move into Mt. Bethel Village!

Recently, someone asked, “Do you support congregate settings?” My response was, “I support as many options as possible for people with disabilities to have choices, therefore it does not matter whether or not I agree with their choice or not – they have the right and dignity to choose.” Our discussion went back and forth and eventually culminated with him adamantly urging that people with disabilities do not want to live together. I have traveled all over the USA and seen countless examples of people with disabilities choosing and happily living in intentional communities among peers. Many of the individuals I’ve met lived on their own and were unsatisfied or even victims of abusive situations. I assumed he was simply unaware of the supportive housing communities I have visited. I asked if he would like to be introduced to self-advocates who have chosen to live as neighbors in intentional communities, and he refused to even give me his contact information to make introductions. His resistance has inspired me to start sharing interviews of residents living in an array of housing options all across the country. Stay tuned for more of these incredible stories!

California : Comments on the Home and Community-Based Services Rule

The following are excerpts from public comments by Jill Escher, President of the Autism Society San Francisco Bay Area, to the California HCBS advisory group on 10/27/15:

"In spite of the staggering numbers of young ASD [Autism Spectrum Disorder] adults with significant and complex support needs, California has failed to develop any plan for expanding housing to serve them. And, though ludicrous and ruinous, some disability advocates are vying for a narrow reading of HCBS, essentially attempting to sharply limit choice and erect high barriers to new disability-friendly developments, even for the most severely disabled who cannot thrive in generic apartment environments, and indeed would be vulnerable to the abuse, neglect, and isolation."
 
..."Consistent with common sense, civil rights laws, and fair housing laws, the menu of options available to the severely autistic must be at least as broad as those available to the non-disabled, and should include congregate settings (agricultural projects, farms, disability-friendly group environments, and so-called "gated communities" included) and amenity-rich developments designed to meet the unique needs of our disabled individuals."
 
"... 'heightened scrutiny' should be employed solely to ensure that any residential choice (even and especially a disability-centered choice) is in fact the result of a choice on the part of the consumer and/or his/her conservators, and not the result of coercion or restraint on the part of government or governmental agency."
 
Read the complete statement on the SFAutism Blog.

Contact information: 
info@sfautismsociety.org. 
(650) 637-7772
Autism Society San Francisco Bay Area
PO Box 249, San Mateo, CA 94401

Chicago, IL : Misericordia hosts conference on community choice

Misericordia,  a network of services that provides a full continuum of care for over 600 people with mild to profound developmental disabilities in Chicago, hosted the “Together for Choice” conference from October 21 - 23, 2015.

Misericordia provides a range of services from a skilled nursing residence, group homes, and apartments on its 31-acre campus to small neighborhood homes in the surrounding community. It also provides employment opportunities for people with a variety of skill levels in its bakery and coffee shop and other on- campus businesses and off-campus community businesses. The quality of care and the dedication of its staff to the people they serve is obvious to anyone taking the time to tour its facilities and talk to the staff and residents.

It is precisely these kinds of programs that serve a full range of developmental disabilities in a variety of settings that are a likely target for de-funding under the Home and Community Based settings (HCBS) rule that was issued by the federal Centers for Medicare and Medicaid Services last year. While the rule encourages states to shun any association with “institutional” care in its funding of HCBS, the importance of maintaining a full continuum of care to people with severe and complex disabilities is exemplified by the success of Misericordia’s programs and its popularity with the families and individuals it serves.

The Coalition for Community Choice came together in Chicago to represent the many concerns of families over the implementation of the HCBS rule and the CCC's determination to assure that all people with developmental disabilities have available to them a full range of options to meet their needs and to allow them choice in how they live their lives.
 
A Chicago ABC7 newscast of the event, describes the “The Together for Choice” conference:

"It's giving us the opportunity to pull together many like minds, people that are providing excellent services whether it's a campus setting, a farm setting, individual homes in the community, whatever it is as long as it's for the people that we serve," said Geana Connelly, Misericordia administrator.

"You can be big and good or big and bad. You can be small and good or small and bad. It all depends on the people that are operating these services and staffing that is within those services," Sister Connelly said.

The people at the conference say they just want legislators to remember that the primary concern should be the quality of care, not the size of the facility.
 
The “Together for Choice” conference was covered by a Chicago ABC 7 newscast on October 25th, 2015. See the report by Hosea Sanders and video of the newscast here. 

The Community Choice Coalition Statement on the 25th Anniversary of the ADA

This is from the Community Choice Coalition Blog, by Desiree Kameka, 8/7/15.

Excerpts:
 
In almost two decades [and] since Olmstead, self-advocates, parents, legislators and others have worked together to change regulations, laws and develop new ways of thinking about support services so individuals with disabilities can have more choices and control of their lives. Coalition for Community Choice is a national collaboration of more than 125 organizations, businesses, housing developers, providers and advocates who want to increase options and decrease barriers to housing and employment choices.

Today, individuals with I/DD may have the option to live alone or with roommates in their own home or apartment, in a group home, in an adult foster care home, on a farmstead or ranch, or on a supportive living campus setting, all with supports they need to be able to interact with the greater community to the fullest extent possible. But four years from now this may not be true. [emphasis added]

Recent changes in federal and state regulations may limit what constitutes an integrated residential setting. The Centers for Medicare and Medicaid Services (CMS) issued new requirements about housing and employment settings that states have five years to implement through State Transition Plans. For a person with I/DD, these changes may have the unintended consequences of reducing the options available and increasing barriers to that individual’s right to choose his or her preferred setting.
 
Affordable, supportive housing will be one of the most acute areas to be addressed in the next 25 years of the ADA, and it may prove to be a frustratingly elusive target. A snapshot of the statistics sizes the challenge. According to the 2013 State of the States in Developmental Disabilities report:

• There are 4.9 million adults with I/DD in the U.S.
• Of the 4.9 million, 3.5 million live with family caregivers, and 853,000 of these family caregivers are 60 years of age or older and may soon need their own caregivers
• 77 percent of the 3.5 million receive no residential supports
• Only 244,195 additional residential placements were funded from 1994-2011

Rather than mitigate the housing crisis, in the 25 years since the ADA and 16 years following the Olmstead decision, the number of adults with I/DD on a waiting list for, but not receiving, residential services has increased more than 66 percent…

Read more…

Together for Choice Conference, October 21 - 23, 2015

Together for Choice

October 21 - 23, 2015
Misericordia
6300 N. Ridge
Chicago, IL 60660

Wednesday, October 21, Loyola University, Water Tower Campus
6 - 9pm    Networking Dinner * Kasbeer Hall, Corboy Law Center
                25 E. Pearson, Chicago, IL 60611

*********************** 
Thursday, October 22, Misericordia Heart of Mercy Campus
7:30am    Registration and Continental Breakfast

AM speakers and events:  

• Welcome Address: Sr. Rosemary Connelly, RSM
  The Historical Challenge: One Size Does Not Fit All 
• Bill Choslovsky and Scott Mendel, Olmstead/Ligas/ADA Identifying Aspects that Support Choice
• Tours of Misericordia campus

PM speakers and events: 

• David and Susan Axelrod, Keynote Speakers 
• Mark Olson, When Regulations and Policy Collide with Choice 
• Sharing and Promoting Great Models and Best Practices
• Synthesizing of Information - Next Steps
• Cocktail Reception and Conference Dinner at Misericordia 
• Self Advocates: Voices for Choice discussion

***********************  
Friday, October 23, Misericordia Heart of Mercy Campus

• 8am Check in and Continental Breakfast 
• Coalition for Community Choice Fall Meeting for Members

*********************************
 See the Conference Flyer for more information on the speakers, the Coalition for Community Choice, and registration

More on ND : Rationale for approving community-based services in proximity to an institution

The CMS (Centers for Medicare and Medicaid Services) approved a transition plan for implementing the new Home and Community-Based settings rule for North Dakota that included providing Home and Community-Based Services (HCBS) on the grounds of an institution. Residents live in cottages near the institution and receive HCBS funding through Medicaid Waivers that pay for day services as well as services in their homes. The settings rule requires “heightened scrutiny” by states and the CMS to ensure that certain settings are not isolating and provide access to the broader community. 

The rationale given below could also apply to any congregate setting of 4 or more individuals with disabilities who live or participate in activities together, including people with autism and other disabilities who live in planned communities. This is believed to be the first ruling by the CMS using the “heightened scrutiny” review.
 
The North Dakota plan, on pages 27 and 28, includes these responses to commenters:

“One commenter disagrees with the Department [North Dakota Department of Human Services] determination that Aged and Disabled adult residential care settings can fully comply while serving between 10 and 36 individuals each, contending that even with remedial strategies  and timelines just based on size these are ‘mini institutions’. Commenter believes … that individuals should be able to receive service in their own home or apartment.”

Response from DHS: “As stated in the CMS’s summary of these regulations, the intent of the HCBS settings rule is to create 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. When assessing compliance of adult residential service settings DHS focused on the recipient’s experience rather than the size of the facility. Individuals can access other wavered services to meet their assessed needs. Consumers and their families make the decisions about what type of services they wish to participate in and who will provide the care; including the decision to use residential services.”
...
“…on-site visits were conducted of the settings in question which validated the Department’s position that these settings are not isolating and do have HCBS qualities and characteristics. Some individuals living on the grounds of the State ICF have been unable to successfully secure housing or services off the grounds of the State ICF, which is less restrictive than living in the State ICF. Other individuals/guardians have made the choice, including tours/visits, to determine if they would like to move…”

Response to two more commenters opposing HCBS funding on the grounds of an ICF/IID:

“In addition to the information provided in the Statewide Transition Plan …on-site visits were conducted of the settings in question which validated the Department’s position that these settings are not isolating and do have HCB qualities an characteristics. The individuals are assessed at least annually to determine if alternate service settings are available and are afforded the choice, including tours/visits, to determine if the would like to receive services at another location….”

See the Coalition for Community Choice

VOR's Weekly E-Mail Update 

Objections from advocacy organizations

Michigan: Aacorn Farm - Expanding Choices, Building Community

Check out the Website for Aacorn Farm, an innovative agricultural community for adults with autism and other disabilities. It has an especially good "newsroom" with up-to-date information on autism.

Are innovative programs for people with autism and other developmental disabilities going to fall victim to the pressure by the federal government and federally-funded advocacy organizations to deny people with DD access to specialized residential and service options? See more about intentional communities and choice at the  Coalition for Community Choice .

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

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. 

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 "...is 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.

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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.

Congress Pushes Back on HCBS Rule Listing Farmsteads as "Isolating"

The Centers for Medicare and Medicaid Services (CMS) provided states with “Guidance on Settings that have the Effect of Isolating individuals receiving HCBS from the Broader Community.” "Farmsteads or disability-specific farm communities" are among the settings listed that may no longer qualify to receive Medicaid funding for Home and Community-Based Services (HCBS) under the new HCBS settings rule.

Many family groups have initiated projects to create planned communities, including "farmsteads or disability-specific farm communities", as a response to the poor quality and general lack of availability of residential options for people with disabilities. These communities have now been singled out for isolating people from the broader community:

From page two of "Guidance..."

"...Farmstead or disability-specific farm community: These settings are often in rural areas on large parcels of land, with little ability to access the broader community outside the farm. Individuals who live at the farm typically interact primarily with people with disabilities and/or staff…[a number of assumptions about the lack of integration with the broader community follows.]…Thus, the setting does not facilitate individuals integrating into the greater community and has characteristics that isolate individuals receiving Medicaid HCBS from individuals not receiving Medicaid HCBS.” The assumptions about isolation are hotly disputed by people who live and participate in these programs and their families.

In a letter dated 1/26/15, to Sylvia Burwell, the Secretary of the U.S. Department of Human Services, Ohio legislators have pushed back on the idea that these settings are isolating and should not receive HCBS funding:

“…Ohio is home to several farmstead programs, which provide vocational and educational programs, and residential support for people with autism. We have heard from constituents across Ohio that these farmstead programs are a very successful environment for a large percentage of the autism community. It is our understanding that while individuals spend a good deal of time in the farmstead environment, they are exposed regularly to the outside community for a variety of activities. Overall, the farmstead setting provides unique support for individuals with autism enable them to maximize their potential.

“We have concerns that this rule could inhibit the availability of these types of services for individuals who benefit from them. Many of these participants have been attending and participating in these services for years. We urge you to reconsider this guidance so that the option for individuals to live and work in a rural, farmstead or disability-specific farm community remains a choice for individuals and remove them from the list of having an isolating effect.”

The letter is signed by one U.S. Senator and  13 members of the House of Representatives from Ohio, including John Boehner, the Speaker of the House.

For more information on choice in community settings see the Coalition for Community Choice website and  the CCC Blog - "Advancing the principle that community can be experienced in all residential settings".

Innovative Housing Solutions - Who Decides?

[This is an article from the Benjamin's Hope 2014 Winter Newsletter. Ben's Hope is a faith-based community model in Holland, Michigan, "designed to address the multifaceted needs of individuals and families affected by autism and developmental disability." By mid-winter, Ben's Hope will house 24 people in six four-person group homes.]

Policy debate rages about where people with developmental disabilities should live. Urban settings? Rural? Alone or with people? People who are similar? Or, people who are different? Where should the Medicaid dollars be used?

Ultimately it comes down to a discussion about community. what characteristics define community? Who defines community?

At a time when we face a critical shortage of housing options for individuals with developmental disabilities, we also face virulent advocates and policy makers purporting that individuals with disabilities who utilize public funding should not be permitted the choice to live in a setting like Benjamin's Hope, asserting that such settings isolate people. These advocates seek to influence policy to prohibit people with disability the right to use funding to which they are entitled in their setting of choice.

At the 1990 signing of the Americans with Disabilities Act, President George Bush stated, "Today's legislation brings us closer to that day when no Americans will ever again be deprived of their basic guarantees of life, liberty, and the pursuit of happiness."

Yet, in March 2014 the Center for Medicare and Medicaid Services issued Home and Community Based Service rules that oppress innovative, fiscally responsible models that are in high demand by individuals with disabilities and their families. This rule effectively narrows choice.

When asked to share why he has chosen to live at Benjamin's Hope, Lucas VanderKolk (19) wrote these words:

bens hope is a place where everyone is welcome not only to residents but to the community also. I don't have to be scared of not fitting in because everyone is welcome.

I don't have that fear of sticking out like a sore thumb, because it's a place where everyone is welcome and people don't look at me funny or think that I'm stupid because I'm special needs. I never thought there would be such a place like bens hope. I don't have to hide anything ever, i don't have to worry about not fitting in.

I may be different but here at bens hope different is good and i am welcome unlike other places i just fell like i don't and can't fit in but at bens hope i don't have to worry about any of that.

By taking away choice, we stand in danger of returning to a day when people with disability had no voice. Let's not repeat the mistakes of history. Stand with us in protecting the rights of people with disabilities to define for themselves what community means.

Lucas, we hear you.

Videos: CA innovative housing for Autism and other DD

[These are videos from the San Francisco Bay Area Autism Society housing conference, May 10, 2014.]

Part 1: Autism / Developmental Disability Housing Options: The Growing Need

...Soaring demand with lack of housing options

Part 2: Housing Options: Single-Family Home Based Models 

 ...Overview of autism/DD housing options based on a single-family home model, including living with parents, legacy homes, licensed group homes, unlicensed co-ops and adult foster care.

Part 3: Housing Options: Multiplex and Intentional Community Models

...Overview of autism/DD housing options based on multifamily or congregate models, including market-rate apartments, affordable "set-aside" units, investment-based multifamily complexes, and nonprofit intentional communities.

Part 4: Needed Policy Changes

...Overview of many of the policy changes necessary to facilitate the creation of new housing options for adults with autism or developmental disability.  

MI HCBS Transition Plan - comments due 12/24/14

The Michigan Department of Community Health has released its transition plan for implementation of the federal Home and Community Based settings rule that was issued in January 2014. The announcement begins with a summary of the purposes of the rule. This characterization does not include any of its negative features such as limiting choice for individuals with DD who choose to live or receive services in congregate settings (more than 3 or 4 people with disabilities living  or receiving services together), including planned or intentional communities. Neither does it include exceptions to the rule for health and safety reasons.

To decipher the acronyms used in the transition plan document, refer to page 1, row 1, and the last two columns to the right under "Sources" and "Key Stakeholders". 

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The Centers for Medicare and Medicaid Services recently made a new set of rules for the delivery of Home and Community Based Services through Medicaid waiver programs. Through these rules, the Centers for Medicare and Medicaid Services aim to improve the experience of individuals in these programs by enhancing access to the community, promoting the delivery of services in more integrated settings, and expanding the use of person-centered planning. 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.

Overview of the Settings Provision

The final rule requires that all home and community-based settings meet certain qualifications. These include:

* The setting is integrated in and supports full access to the greater community;
* Is selected by the individual from among setting options;
* Ensures individual rights of privacy, dignity and respect, and freedom from coercion and restraint;
* Optimizes autonomy and independence in making life choices; and
* Facilitates choice regarding services and who provides them.

The final rule also includes additional requirements for provider-owned or controlled home and community-based residential settings. These requirements include:

* The individual has a lease or other legally enforceable agreement providing similar protections; 
* The individual has privacy in their unit including lockable doors, choice of roommates and freedom to furnish or decorate the unit;
* The individual controls his/her own schedule including access to food at any time;
* The individual can have visitors at any time; and
* The setting is physically accessible.

Below please find links to Michigan's HCBS Transition Plan as well as links to source documents about the HCBS rule change from the Centers for Medicaid and Medicare Services.


The MI Home and Community Based Settings rule Transition Plan

The Department released the draft plan for public comment on November 24, 2014 and will be accepting comments until December 24, 2014. You may submit comments regarding the transition plan by e-mail to:

HCBSTransition@michigan.gov

or by mail to:

Attention: HCBS Program Transition
Medicaid Policy
Michigan Department of Community Health
P.O. Box 30479
Lansing, Michigan 48909-7979

All comments on this topic should include a "HCBS Transition Plan Comment" reference somewhere in the written submission or in the subject line if an e-mail is used. Comments and related responses will be available on this website following the end of the comment period. Please list or summarize your comments in a document or email. Please do not submit an electronic version of the draft statewide transition plan using the "track changes" function.

The purpose of this review and comment on the draft statewide transition plan is to develop and implement the best plan and process possible for review and assessment of settings. Discussion regarding evidence that a particular setting is "home and community-based" and/or similar comments will not be considered. Please limit your comments to the content of the draft plan.

-MDCH Website

Centers for Medicare and Medicaid Services
The Centers for Medicare and Medicaid Services have provided fact sheets, webinar slides, informational bulletins, and toolkits HERE .

"Community" is in the eye of the beholder

 The stigma of “congregate settings” for those with disabilities stems from a troubling history, but we shouldn’t be creating barriers to affordable housing solutions that offer access to recreation, employment, and real relationships for people with and without disabilities. What constitutes as “home and community” shouldn’t be defined by policymakers, but by people with I/DD who have the right to live in a home and community of their choice.... Desiree Kameka

From the Autism Housing Network: 

Study: 50% of Americans don’t recall the name of “that lady across the street”
 
By Desiree Kameka on August 15, 2014

By now, many of you have probably seen Brian Bethun’s article The End of Neighbors or coverage by The Today Show, TIME Magazine, or AOL that reported 50% of all Americans do not even know their neighbors’ names. Bethun illuminates the notion that we, as a society, need to foster more human connections.

It is no surprise to those of us in the disability advocacy community that neighborhoods today are not cultivating community relationships let alone integrating those who have intellectual or developmental disabilities (I/DD). For years, organizations, like those in the Coalition for Community Choice (CCC), have been working to convince policymakers that being part of a meaningful community must extend further than simply being located in a neurotypical residential neighborhood.

People with I/DD who are living in their family homes or group homes often have little social capital because they lack employment options, transportation, and opportunities to develop real unpaid friendships with their neighbors. I may have a conversation with the gentleman who bags my groceries every week, but I don’t feel it’s appropriate to invite him to my apartment for dinner as he takes my groceries to the car. We first need to build a relationship … but how?

Grass roots efforts across the nation are trying to create public-private partnerships and develop “intentional communities” that would offer urgently needed housing options to people with and without disabilities. By fostering integration and relational community, these spaces may include planned recreational opportunities, social enterprise employment options, and community amenities that would benefit the local area. Counties, faith communities, and local non-profits have stepped in to support these efforts financially. Designed and informed by local individuals with I/DD, these community projects relieve states of a financial burden. While discrimination and NIMBY (Not In My Back Yard) are struggles facing these supportive housing opportunities, government policy creates barriers, as well.

Susan Pinker, author of the Village Effect, says that “face-to-face contact matters: tight bonds of friendship and love heal us, help children learn, extend our lives and make us happy.”  The CoHousing movement, Fellowship for Intentional Communities, Agrihoods, and other “Live-Work-Play” planned communities are emerging for neurotypicals who are fighting against the effects of isolation. Intentionally neurodiverse communities aim to foster supportive environments that value and nurture relationships.  You will undoubtedly learn your neighbors’ names in these friendly neighborhoods.

The stigma of “congregate settings” for those with disabilities stems from a troubling history, but we shouldn’t be creating barriers to affordable housing solutions that offer access to recreation, employment, and real relationships for people with and without disabilities. What constitutes as “home and community” shouldn’t be defined by policymakers, but by people with I/DD who have the right to live in a home and community of their choice.

If you would like to  connect with others and be an advocate for increased supportive housing choices in your state, Take action now and make sure your state ensures people with I/DD will have a broad range of housing options for the future!

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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.