News from ACCSES on Disability Policy and Closing Sheltered Workshops

ACCSES is an organization representing providers of disability employment services. Here are excerpts from their newsletter, The Weekly Windup:

November 18, 2016

PRESIDENT-ELECT TRUMP'S POSITIONS ON DISABILITY ISSUES

In September, the presidential candidates responded to questions posed by the American Association of People with Disabilities, the National Council on Independent Living, and the REV UP Campaign, as to the candidates’ positions on issues important to many in the disability community. Although ACCSES has previously circulated the questionnaire responses, we want to provide President-Elect Trump’s responses separately as they might be of greater interest now following the election. To read his answers to the questionnaire, click here.

December 8, 2016

MAINE IS BACK IN THE HOT SEAT

Maine has continually been held up by disability advocates fighting to limit a full array of employment opportunities and housing options for people with the most significant disabilities. Just this week, another scathing article was published on the growing waiting lists in Maine and the lack of funding. All while people with disabilities are denied jobs and housing options are shrinking. Click here to read the article published in the Portland Press Herald.

[See also, "Negative effects of Maine's Conversion from Sheltered Workshops to Integrated Employment", 6/23/15]

December 16, 2016

DISABILITY ADVOCATES HIT WITH THE REALITY OF THEIR ACTIONS

Many disability advocates have pushed policy makers to close center-based employment programs and to get rid of the special minimum wage. In Massachusetts, the state, with urging from advocates, closed its sheltered workshops "with the promise of expanding more inclusive employment and meaningful day opportunities for people with I/DD." Instead, Massachusetts cut funding, and with it the prospect of hoped-for jobs. (ACCSES notes that people with disabilities who are working may not wish to be placed in "meaningful day programs," any more than any other worker wants to be laid off.) In a guest column for a Massachusetts newspaper, Gary Blumenthal acknowledges that while Massachusetts' unemployment rate may be 3.3 percent overall, the unemployment rate for people with disabilities is over 70 percent. This result comports with the risk a recent report from the Congressional Joint Economic Committee warned about if Section 14(c) were to be eliminated. Keeping workers attached to the workforce can make a substantive difference in future success. Eliminating jobs without jobs to replace them only harms the people who want to work. ACCSES continues to advocate that people with disabilities have a right to choose where they want to work; our State and Federal governments must keep a full array of options available through common sense policies that protect the right to work.

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.

December 2016: Post Election Update from the Coalition for Community Choice

The latest news from the Coalition for Community Choice: 

• HCBS Compliance conference call, December 12th or 14th, 2016
• Disability Housing: What's Happening? What's Challenging? What's Needed?
• Illinois: Suffering in Secret
• Self Advocate Supports Intentional Communities on Youtube
• Plus more on HCBS policy, CMS, Employment, etc.

VOR position paper on Guardianship vs. Supported Decision-Making

VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities. VOR advocates for a full range of options to address the full range of needs of people with intellectual and developmental disabilities and their families.

The following is a Position Paper  from 11/2016 on Guardianship vs. Supported Decision-Making. 

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

Issues to Consider Regarding Guardianship and Supported Decision-Making
By VOR's Issues and Oversight Committee on Guardianship Rights

Individuals with intellectual and developmental disabilities (I/DD) and their parents, family members and guardians may have heard about Supported Decision-Making (SDM), an initiative that could affect their decision-making rights. Some see SDM as an alternative to guardianship, while others view it as an attempt to remove the legal instrument that provides a safety net for vulnerable individuals.  

VOR is a national organization that advocates for high quality care and human rights for individuals with I/DD. We understand the valuable role that guardians play in the emotional and physical well-being of their wards. As advocates who appreciate the diversity of the I/DD community and the need for a wide array of supports, we want to ensure that guardians and family members are aware of the issues connected to Supported Decision-Making so that they can make informed decisions about the care of their loved one with disabilities.

What is Guardianship?

Guardianship is the legal process whereby a state court appoints a person or organization to have the care and custody of an adult or child who has been determined to be legally incapacitated. Parents are the assumed legal guardians of their minor children, but a guardian may be appointed for a child if the parents are not able to fulfill that role. An incapacitated adult is one who has been determined by a court to lack capacity to make some or all personal and/or financial decisions and for whom a guardian has been appointed.

Guardianships are awarded to protect the “ward,” the individual with a disability, from abuse, neglect, and exploitation. Guardians are expected to act in the best interests of the individual and to make decisions over medical, psychiatric, behavioral, and all other aspects of the person’s care that are authorized by the court based on the degree to which the individual is incapacitated. Legal guardianship is both a responsibility and a privilege.

What is Supported Decision Making?

The Supported Decision-Making movement is a new initiative that promotes the idea that, with almost no exceptions, all people with I/DD can make their own decisions with support from an informal network of advisors. Supporters of SDM claim that empowering individuals to make their own decisions would make most guardianships unnecessary. The advisors do not need to be court-appointed and do not bear any responsibility for ensuring the success of outcomes. Supported Decision-Making proponents view the “Right to Fail” as an important freedom, regardless of the individual’s ability or vulnerability.

Issues to Consider

Supported Decision-Making might help those who need guardianship the least, if at all. In the process of attempting to change guardianship laws, it could weaken protections for those who are the most vulnerable. Those protected by guardianship include people with severe intellectual disabilities, people with I/DD who are susceptible to manipulation and coercion, and people with I/DD who lack awareness of the consequences of their actions and may cause harm to themselves or to others.

The primary goal of SDM is to move away from “substituted decision-making”, where the guardian makes decisions for the incapacitated ward. Proponents of SDM make the assumption that all people with disabilities are capable of making all decisions for themselves with help from a support team. This approach would then, in fact, be doing what SDM proponents criticize: substituting the judgment of the incapacitated ward with the judgment of a “support team”.

Guardians of people with I/DD usually have an existing network of informed persons to assist them in making decisions for their wards, including other family members, direct care providers, and medical personnel. This is what SDM promotes, but without the protection of court-ordered guardianship. The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making, the more their participation should be included. But, it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation. Most individuals with intellectual disabilities change over time, their needs change accordingly, and their ability to make their own decisions in a responsible manner should be examined at regular intervals.

VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship. To eliminate guardianship or make it more difficult for family members and friends to become guardians will leave people with I/DD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent.

When people with I/DD and their families are presented with Supported Decision-Making, the should consider the following: 

• The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) states: “individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.” - DD Act, 42 U.S.C. 15001(c)(3)(2000)
• Is the individual prepared to take on the responsibility of Supported Decision-Making?
• Is the individual’s support group prepared to address the changing needs of the individual over the course of their lifetime? How will you maintain and ensure a consistent team of advisors?
• How do you reconcile the “Right to Fail” with the safety and comfort of the individual?
• How do you determine if SDM is not working and legal guardianship would be appropriate?
• You and your loved-ones with I/DD have the right to decide what is best for your unique situation, based on individual need. Take your time in making any major decisions regarding guardianship.

VOR does not oppose the use of SDM for all who voluntarily wish to use methods promoted by advocates of SDM.  All decisions rest with the individual or the legal guardian as authorized by a state court and it must be understood that guardianship procedures are available to those who need them, regardless of their participation in SDM activities. As such, there is no reason to give up guardianship in order to use Supported Decision-Making.

Changes to guardianship laws in many states have already been proposed. Families should keep abreast of these changes and advocate for their loved-one with state officials if the changes could weaken the protections upon which he or she relies. VOR will do its best to keep you informed. Our vulnerable family members deserve nothing less than the protections that family guardians can provide.

Home Help Services in Michigan : Some reforms, but are they enough?

On November 10, 2016, I wrote a blogpost on fraud and abuse in the Medicaid-funded Personal Care Services program. Michigan's version of this program is known as Home Help Services. This is a follow-up on updated information on MIchigan's program of in-home support for people with developmental and other disabilities.

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

In June 2014, the Michigan Auditor General released a report on the Michigan Home Help Program that revealed multiple problems with fraud and abuse in the system of Medicaid-funded home care for people for with developmental and other disabilities. This was covered by The DD News Blog along with reforms approved by the state including criminal background checks on caregivers. 

My two adult sons with DD live in a group home and do not receive services through the Home Help Program. These services are included in the care that the group home provides along with other services to meet their extensive needs for care and supervision. The Home Help Program is set up to provide non-medical services in one’s own home or in the home of another such as a relative or friend. They include help with activities of daily living.  Community Living Supports that facilitate an individual’s independence, productivity, and promote inclusion and participation are usually provided under Michigan’s Medicaid waiver program for DD. These services are not the same as Home Help Services and are administered and funded under a different program.

I have heard complaints about the computerized system that the state has set up for registering with the Home Help program and receiving payments for services, but beyond that, I don’t know much about it. If anyone would care to leave a comment on this blogpost on how well the Home Help program is working, I would be glad to hear from you.

More information on the Michigan Home Help program:

Here is the Michigan Home Help Website. 

This includes an update on the Electronic Verification System (EVS) for Home Help Providers who are often parents or other relatives of the person receiving care. To my mind, the most important item here is the Provider Hotline at 1-800-979-4662 for assistance with the EVS. 

There are links to all kinds of information. I linked to Provider Trainings and came up with this message: “Contact your local DHS (Department of Human Services) office for information available in your area.” Apparently, training is handled locally, but I don’t know if there are state guidelines for what is available. 

Here are Frequently Asked Questions (FAQs) about the Home Help program with important contact information on all aspects of the program for providers. 

One revealing link is to pay rates by county for caregivers and agency providers, as of 1/1/16.  Most counties pay $8.50/hour to individual providers with a few paying up to $11/hour. Wow! This is hard work, but don’t expect that to be reflected in individual pay rates.

Michigan has a registry for providers, but does not have a link to a list of home care workers. For people interested in providing services for additional clients, call 800-979-4662 to be placed on the registry.

There is more detailed information on the Website that will be of interest to providers of services.

Fraud and abuse in the Medicaid Personal Care Services program

“Stunning” is the word that comes up most often to describe this week’s election. 

The GOP has promised to repeal Obamacare with few detailed plans, as yet, to replace it or preserve parts that have worked and are generally popular. This uncertain future makes it hard to comment on policy regarding Medicaid-funded healthcare and caregiving for people with DD. Nevertheless, an article, “Report Finds Caregiver Fraud Widespread” by Melissa Bailey, 11/8/16, that examines Medicaid in-home Personal Care Services is relevant for now and will continue to be relevant as long as these services are publicly funded. [The article appeared in Kaiser Health News (KHN) and was republished by Disability Scoop.]

According to the article, the Medicaid Personal Care Services program (known as Home Help Services in Michigan) is “rife with financial scams, some of which threaten patient safety…” A report from the Office of Inspector General (OIG) for the US Department of Health and Human Services recommends that the federal Centers for Medicare and Medicaid Services (CMS) improve oversight and monitoring of the program "...to prevent and detect improper payments, facilitate enforcement efforts, and reduce the risk of beneficiaries being exposed to substandard or otherwise harmful care.” 

Personal Care Services “provide non-medical assistance to the elderly, people with disabilities, and individuals with chronic or temporary conditions so that they can remain in their homes and communities. Typically, an attendant provides PCS. In many States, PCS attendants work for personal care agencies, which are enrolled in the Medicaid program and bill for services on the attendants' behalf…”

More from the KHN article:

“The OIG has investigated over 200 cases of fraud and abuse since 2012 in the program, which is paid for by the federal government and administered by each state. These caretakers, often untrained and largely unregulated, are paid an average of $10 per hour to help vulnerable people with daily tasks like bathing, cleaning and cooking.

“The report exposes vulnerabilities in a system that more people will rely on as baby boomers age. Demand for personal care assistants is projected to grow by 26 percent over the next 10 years — an increase of roughly half a million workers — according to the U.S. Department of Labor.

“‘This type of industry is ripe for fraud,’ warned Lynne Keilman-Cruz, a program manager at Alaska’s Department of Health and Social Services who has investigated widespread fraud. The risks increase because the care takes place out of view in people’s homes, and because neglected patients may not advocate for their own care.”

The OIG report calls on CMS to “establish national qualifications, including background checks, and ensure every claim identifies the worker and time of service. It also called on CMS to require states to enroll all personal assistants, so they can be tracked by unique numbers.” These are all sensible recommendations to reduce fraud and protect Medicaid beneficiaries. 

CMS, however, is “treading lightly” in deference to disability groups who fear that stricter regulations may limit beneficiaries’ access to caretakers. This fear is not unfounded, but why are disability advocates willing to trade access to caretakers for the perpetuation of abusive and fraudulent practices that undermine the program and risk the safety of people with disabilities? Is it too much to ask advocates who claim to represent our family members with disabilities to take a stand in favor of both access and high quality care? 

Instead of mandatory background checks and training for Personal Care Services, CMS has opted to give $50 million in grants to 26 states to set up background check programs. Instead of requiring mandatory training, CMS has offered states the option of offering basic caretaker training “without usurping beneficiary decisions on what skills are most appropriate for their home care workers”. These measures may be a step in the right direction, but why not require training specified in a plan of care based on individual need and preference, rather than leaving it up to chance as to whether the home care worker has the skills to do the job he or she is hired to do?

Here are excerpts from another article from Kaiser Health News on California’s In-Home Supportive Services Programs,  “Lots Of Responsibility For In-Home Care Providers — But No Training Required” by Anna Gorman, 1/6/15:

“No overall training is required for the more than 400,000 caregivers in California’s $7.3 billion In-Home Supportive Services Program (IHSS) for low-income elderly and disabled residents. Without instruction even in CPR or first aid, these caregivers can quickly become overwhelmed and their sick or disabled clients can get hurt, according to interviews with caregivers, advocates and elder abuse experts.”

…

"IHSS was never intended to be a medical program. The caregivers are distinct from visiting nurses and the certified home health aides often dispatched after a hospital stay. IHSS caregivers are not certified or licensed and are hired to do personal care and household tasks.

“But more than a quarter of IHSS clients are 80 or over, and many have chronic health conditions or dementia. In these and other cases, caregivers can end up providing basic medical care–helping to administer insulin shots, manage other medication or dress wounds, for instance.”

Here again the issue of training is controversial:

“A union that represents caregivers ... sees advantages to a minimum level of training.

“SEIU-United Healthcare Workers West proposed a statewide initiative last year that would have required 75 hours of training, but the union didn’t get enough signatures to put the measure on the ballot. SEIU plans to try again for the 2016 ballot.

“Requiring training would ‘save lives,’ said Loretta Jackson, who serves on the union’s executive board and is an IHSS caregiver in Sacramento. It would also reduce the risk of injuries to caregivers, she added.”

But disability advocates balk at requirements that might threaten access to caregivers. 

“Eileen Carroll, the deputy director of the California Department of Social Services, said the program doesn’t have a lot of training requirements because it was set up to give clients the choice of how they want their care delivered.”…

“Carroll said the state is in a tough situation. Training is a positive thing, she said, 'but you have a very strong adult disabled community in this program who … oppose any mandatory training.’

"Many disability rights advocates say a training mandate would make it more difficult for IHSS consumers to find caregivers, chip away at clients’ autonomy and drain resources from the program.

“‘The idea of choice is really paramount,’ said Deborah Doctor, legislative advocate at Disability Rights California. ‘Anything that puts a requirement that erodes that choice is a problem.’”

Again, why not tie the training for the home care worker to the individual needs of the person receiving care with that person’s participation in determining what is needed? That way the appropriate level of training would be provided leading to both access and higher quality care without compromising the beneficiary's right to choice.

The cost of improving the Personal Care Services program is the unspoken issue influencing the CMS decision on whether to impose higher standards on states to better ensure the safety of people needing care. These costs also stoke the fear of disability advocates that access to caregivers will be adversely affected. 

Is it too much to ask of federal regulators, state agencies, and especially disability advocates to take a more nuanced approach to the costs and benefits of a system that reduces abuse and delivers better care to those receiving services? It may be that having higher standards reduces many costs over time. And if it costs more to deliver better care and avoid the tragic consequences of allowing abuses of the system to continue, this may be a cost that the public is willing to bear. After all, more and more families are affected by the responsibility of taking care of aging and disabled family members and would rather see a system that provides higher quality care that they can rely on, than one that limps along failing to provide even a basic level of care that protects their loved ones from harm.

Michigan: Annual HCBS Waiver Conference

The Michigan Department of Health and Human Services (MDHHS) & The Michigan Association of CMH Boards (MACMHB) Present:

The Annual Home and Community Based Waiver Conference

November 15-16, 2016
Kellogg Hotel & Conference Center
55 South Harrison Road, East Lansing 48823

FEATURED PROGRAMS
Children’s Waiver Program (CWP)
Habilitation Supports Waiver (HSW)
Autism Applied Behavior Analysis (ABA) Benefit

Conference Objective: This conference will provide technical assistance and training on the implementation and maintenance of the Children’s Waiver Program (CWP) and the Habilitation Supports Waiver (HSW), clinical issues, and administrative functions relevant to these waivers. Additionally, this conference will provide training in ASD, evidence-based services, highlight programs across the state, and provide technical assistance on implementation of the Medicaid Autism ABA Benefit.

Who Should Attend: This conference contains content appropriate for case managers, supports coordinators, clinicians, behavior analysts, administrative staff, providers, autism coordinators, people receiving services and family members and social workers at all levels of practice (beginning, intermediate and/or advanced).

Special Rate: A special $20 conference rate will be offered for people receiving waiver services and their family members.

Conference Brochure & Registration Materials: There is a PDF to download the tentative agenda, registration form and scholarship information.

Click Here to Register

For complete information, see the MACMHB Website

The ADA and Olmstead Protect Individual Choice

This is an article by Carolyn Lahrmann, the President of the VOR Board of Directors and parent of two children with Intellectual and developmental disabilities. For more information, see  VOR Olmstead Resources.

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

Olmstead Protects Individual Choice and Recognizes the Need for Higher Levels of Care

By Caroline A. Lahrmann

Individuals with intellectual and developmental disabilities (I/DD) are far too frequently finding life-sustaining services pulled out from under them by agencies charged with the duty to protect them – namely state departments of developmental disabilities and protection and advocacy organizations. They attempt to use the law as a weapon against the community of people with disabilities instead of the tonic it is meant to be.

These agencies tell the public and lawmakers wrongly, that the Americans with Disabilities Act (ADA) and the U.S. Supreme Court Olmstead decision require “de-institutionalization” and “community integration,” regardless of individual need and choice. We are told that “least restrictive environment” in all cases means small community settings, even when many individuals with I/DD cannot be safely served in such settings and/or they choose the higher level of care provided in large facilities, such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), facility-based day programs and sheltered workshops.

Don’t be fooled by this deception, and don’t let your elected representatives be fooled either. Olmstead’s majority and concurring opinions take great care to stress that “institutions” such as ICFs/IID are a critical part of a range of services that a state must provide to meet the needs of the diverse community of people with mental disabilities. Olmstead recognizes that there are individuals who desire and require a higher level of care for whom “institutions” must remain available. Olmstead also states that the wishes of individuals are paramount in determining residential placement.

The importance of individual choice, including for some the choice of “institutional care,” is repeated throughout Olmstead’s majority opinion as follows:

“Such action (community placement) is in order when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated taking into account the resources available to the State and the needs of others with mental disabilities.” (Emphasis added.)

“But we recognize, as well, the States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States’ obligation to administer services with an even hand.”

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”

“As already observed...the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk...Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting...”

“For other individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available.”

“For these reasons stated, we conclude that, under Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities when the State’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” (Emphasis added.)

In his concurring opinion to Olmstead, Justice Anthony Kennedy warned against its misinterpretation, specifically pointing to state agencies. Kennedy states in Part I of his concurring opinion, which Justice Stephen Breyer joined, that:

“It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

Justice Kennedy then quotes from the majority opinion,

“Justice Ginsburg’s opinion takes account of this background. It is careful, and quite correct, to say that it is not “the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting...” (Emphasis added.)

Justice Kennedy concludes,

“In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” (Emphasis added.)

Justice Kennedy’s warning has sadly proven prophetic for developmentally disabled citizens around the country who have been forced out of their chosen ICF/IID homes, facility-based day programs and sheltered workshops because of real or perceived threats of litigation, oftentimes from federally-funded protection and advocacy agencies set up to protect our most vulnerable citizens.

Olmstead is not a decision to be feared by individuals seeking specialized services for their unique needs connected to their intellectual and developmental disabilities. Congress demonstrated this fact when it recognized the importance of considering individual choice based on need in ADA (Olmstead) enforcement activities in this December 2014 Report language to accompany the Consolidated and Further Continuing Appropriations Act of 2014:

"Deinstitutionalization.-There is a nationwide trend towards deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings. The Department [of Justice] is strongly urged to continue to factor the needs and desires of patients, their families, caregivers, and other stakeholders, as well as the need to provide proper settings for care, into its enforcement of the Americans with Disabilities Act."[Conference Report to accompany the Consolidated and Further Continuing Appropriations Act, 2014(for Commerce, Justice, Science, and Related Agencies, p. 17) (December 2014)].

Olmstead embraces options. Its careful and responsible findings respect the diversity inherent in the community of people with mental disabilities and seek to ensure that all people receive safe, appropriate, and individually-driven services.

Caroline A. Lahrmann

VOR State Coordinator Ohio
Disability Advocacy Alliance, Co-Founder

October is Disability Employment Awareness Month

This video is from Justin Caine of Lansing, Michigan. Justin is a man with a disability who co-founded Good Fruit Video, a video production company which specializes in telling stories of organizations, programs and events to potential customers, clients, sponsors and participants.  He was also the Vice-Chair of the Michigan Developmental Disabilities Council. His company helped produce the above video.

For more information on Justin's business and numerous other activites, see his Linkedin page. 

VOR and YOU : Fighting for a full range of services and against "one-size-fits-all"

VOR is a national organization advocating for a full range of services and residential options to meet the needs of people with Intellectual and Developmental Disabilities (I/DD). This is from the VOR Weekly News Update from October 14, 2016, providing information on some of the issues that VOR has been following in recent months. The VOR Weekly News Update is one of the benefits of membership in VOR.

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

VOR and YOU -  Background on Connecticut and Ohio, Sheltered Workshops

Over the past weeks, VOR has printed several stories on changes to the DD Services system in Connecticut, on our concerns regarding a lawsuit in Ohio, and on protecting sheltered workshops. Many of you understand these stories, and why we take the positions we do, but for those who need it, I'd like to provide a little background. 

In Connecticut, the Department of Developmental Services (DDS) covers all services in the state, both private and state-run. There are few ICF-level beds [Intermediate Care Facilities for Individuals with Intellectual disabilities] in the private facilities. Most are in congregate care facilities operated by the state, including Southbury Training School, and five regional centers. Two of these regional centers are slated to be shut down by January, 2017. 

Admissions to the state's ICF's have been closed since the mid-1990's, and the forces of "one-size-fits-all" have been working hard to move everyone to the community.

But it doesn't stop there. The governor has recently declared a budget emergency, and decided that one large chunk of cutbacks will come by cutting services to CT's most vulnerable. Over the past ten years, one way the DDS has managed to persuade people to exit ICF's has been to transfer staff and peers from a state-run ICF to a state-run group home, keeping people together along with their unionized caregivers, many of whom have been with them for more than a decade. Now the state wants to privatize the homes, remove the caregivers and replace them with workers who are paid less, who many claim are not as well trained and more likely to leave within a year or two. Needless to say, families feel the state has betrayed them. VOR supports the families who want to maintain a full range of residential options, and we ask the Governor to look elsewhere to balance the state's budget.

In Ohio, it's not a matter of public vs. private facilities. The majority of ICF's in the state are private, and Ohio has a strong system of ICF level care. Unfortunately, it has not met the needs of those on the waiting lists who would prefer to live in HCBS waiver group homes. Now, the forces of "one-sizism" are working to grow the group home system at the expense of the people living in ICF's, rather than trying to provide appropriate levels of service to all people with I/DD as needed. They have filed a lawsuit that is remarkably similar to the Ligas case from a few years back that took place in Illinois. Many VOR supporters remember that one. It lasted for years, and required a lot of time, money, and resources from people who wanted to keep ICF-level services viable in Illinois. The suit was finally settled a few years ago, with a victory for our side. 

This new lawsuit, Ball v. Kasich, looks as though the same people have moved a few hundred miles to try to do the same thing to the good people of Ohio, only this time they hope not to make the same mistakes they made in Illinois. VOR supports the families of Ohio who wish to protect the vital services that protect and provide for their loved ones. [See the website for the Ohio Disability Advocacy Alliance]

This brings us to sheltered workshops. Most VOR members do not have loved ones who participate in sheltered workshops. Why should we care? This isn't our issue.

Well, VOR doesn't fight on an issue by issue basis. We fight for principles. The principle that defines maintaining sheltered workshops is similar to the principle of fighting for a full range of residential services. One size does not fit all. We support a full range of employment options, providing meaningful activity and services and measured compensation for all levels. We support competitive employment, employment training and recruitment services, and sheltered workshops and farms and hope that these outlets are available to each and every person according to their level of ability and comfort. 

I hope this explains a little more about us, about who we are and why we do what we do. I hope this helps you to see the connections between the stories we present in our Weekly Updates.

DD News updates for families and people with DD

Here are a few articles that are worth reading: 

The Autism Society of the San Francisco Bay Area Blog is always worth reading, especially when it comes to implementation of the federal Home and Community-Based Settings (HCBS) rule:

You Can Choose Where You Want to Live... Unless You Have Autism 9/21/2016 by Jill Escher Jill Escher is an autism philanthropist, real estate investor, former lawyer, and mother of two children with nonverbal autism. She is also the President of the Board of Directors of the Autism Society of the San Francisco Bay Area.  The Centers for Medicare and Medicaid Services (CMS) is the federal agency that regulates Medicare and Medicaid. CMS issued the controversial Home and Community-Based Settings (HCBS) rule in 2014 that limits HCBS funding for people with disabilities to only those whose residences and services are considered by CMS as sufficiently integrated in the broader community. Here are some excerpts from the SF Autism Blog on the effects of the HCBS rule on people with autism and Intellectual and Developmental Disabilities living in private settings:

AN UNPRECEDENTED INTRUSION INTO PRIVATE HOMES

“Residences controlled by Medicaid service providers like group homes have always needed to pass various CMS tests. But now the agency is undertaking a vast expanse of regulatory reach into private residences owned or leased by the disabled persons, such as homes, apartments, condos, townhomes, mobile homes, houseboats, yurts, farms, ranches, tiny homes… every private place an autistic/DD adult might reside of their own volition. Based on ostensible new CMS rules, after property-based investigations, private homes deemed to be 'noncompliant' will be ineligible for residents to receive HCBS.

"In a nutshell, noncompliance means CMS or the state Medicaid authority has found a private residence has 'the effect of isolating' beneficiaries from the greater community and therefore is legally considered to have 'the qualities of an institution.' ... If the residence does not become “compliant” following an order from CMS or the state, current and future residents are ineligible for HCBS benefits. It's functionally equivalent to a licensing scheme for private residences.

“…if CMS had been upfront and said, “Here’s our new autism/DD private residence licensing requirement,” the ensuing uproar would have crushed the proposal, as CMS lacks authority to regulate private residences. But when you create policy by stealth, smoke and mirrors, closed-door-crafted guidances, and a heap of vague lingo and euphemism, maybe no one will really notice."

read more here….

This blog post is Part 2 of “The Federal Government’s Quiet War against Adults with Autism” 

Here is Part 1 of “The Federal Government’s Quiet War against Adults with Autism

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

Also from the San Francisco Bay Area Autism Society Blog is a post by Lisa Graziano, the parent of a son with Prader Willi Syndrome or PWS. She fears that that the federal HCBS rule will restrict disability-specific housing that her son and others like him desperately need:

The Devastating Impact of CMS Restrictions on Those with Prader-Willi and Other DDs

9/27/2016

by Lisa Graziano

“…Our loved ones with PWS have an insatiable drive to eat no matter how much food they consume and require significant residential and vocational supports. If food is not strictly controlled and locked away, people with PWS will die from stomach rupture or from other food-related complications. Adults with PWS must live, work, and play in settings that are specifically designed to meet their unique health and welfare needs – namely that the refrigerator and food cupboards are locked at all times, trash cans are emptied and secured, there is no access to money or credit cards that could be used to purchase food items, there is continuous supervision to ensure they don’t ask or beg neighbors or otherwise engage their community for food, and they receive support to manage the often violent behavior outbursts common for the syndrome. Without appropriate restrictions, people with PWS will literally eat themselves to death and/or engage in trespasses in relentless attempts to find food.

“Any attempt to integrate people with disabilities in a one-size-fits-all cookie cutter approach, like the federal Medicaid agency CMS appears to be attempting, actually reduces choice and further isolates people with developmental disabilities.”

read more here…

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

From the VOR Weekly Update for October 7, 2016 : 

The COFAR Blog - Guardianship Under Fire by the Same Groups that Oppose Congregate Care

By Dave Kassel, September 30, 2016

Guardianship of persons with developmental disabilities is under fire in Massachusetts and elsewhere, and families could see their advocacy rights eroded as a result. One prominent threat to guardianship appears to be embodied in a process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, friends, and corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

There are some promising aspects to SDM, but a number of concerning aspects as well. To the extent that it can or does replace irresponsible or uncaring guardians with supportive teams, SDM would appear to have a potential to improve the lives of many people.

On the concerning side, SDM does not appear to be well designed for people with severe levels of disability.  Those people are most in need the protections of guardianship; yet, many SDM advocates paint guardianship with a broad, negative brush and don’t appear to acknowledge the value that family members, in particular, bring as guardians to the lives of their loved ones.

Continued here

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

This issue of the VOR Weekly Update includes several articles about the failure of states to live up to their responsibilities to serve people with DD in New York, West Virginia, Connecticut, and Illinois. 

Learn more about VOR:

"VOR is the one organization that strives to keep the big picture in focus. Our goal is to help individuals with Intellectual and Developmental Disabilities (I/DD), their families, their guardians, and their caregivers. We try to see the big picture, that we are all in this together, and that we should be fighting together to improve services for everyone. We should make sure that more funds go to care for and provide support for individuals, and that they don't get diverted to agencies and organizations that profit from promoting ideologies that only serve part of the I/DD community. 

"VOR realizes that individuals need individualized services, and we support the full range of residential and employment options. We support guardianship and recognize it as both a right and a responsibility. We support integrated living for those who seek it, and we support congregate living for those who may not. We know that a home is defined by love and care and safety, not by the size or floor plan of the building. We know a community is not defined by how many non-disabled people are present, but by the sense of belonging one feels with those around them. We know that for some, competitive employment provides a sense of accomplishment, while for others, there are benefits far more important than the size of a paycheck that can be derived from performing meaningful work among one's peers..."

Check out the VOR Website.