Tuesday, December 5, 2017

Michigan: Proposed changes to the Medicaid Manual based on the federal settings rule



From the ARC Michigan Governmental Affairs Update, December, 2017:

"The Medical Services Administration (Medicaid) has published proposed policy creating a new Medicaid Provider Manual chapter for Home and Community Based Services in compliance with the final federal HCBS rule. 
Public comment will be accepted until January 1; the policy has a proposed effective date of January 1, 2018."

Here are the proposed changes - read carefully and comment.


Mail comments [due January 1, 2018] to:

Heather Hill
Bureau of Medicaid Policy and Health System Innovation
Medical Services Administration
P.O. Box 30479
Lansing, Michigan 48909-7979

Phone: 517-241-9397


Policy Subject: New Medicaid Provider Manual Chapter for Home and Community Based Services (HCBS)

Affected Programs: MI Health Link HCBS Waiver, MI Choice Waiver, Managed Specialty Services & Supports Waiver, Habilitation Supports Waiver

Policy Summary: The Michigan Department of Health and Human Services (MDHHS) has developed a new Medicaid Provider Manual chapter for HCBS that describes the requirements under the HCBS Final Rule. These requirements aim to improve the quality of the lives of beneficiaries and allow them to live and receive services in the least restrictive setting possible and be fully integrated in the community.

Purpose: To ensure compliance with federal HCBS requirements. 

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Wednesday, November 22, 2017

Update on Medicaid Home and Community-Based Services

The final implementation of the controversial 2014 Federal Home and Community-Based Settings rule has been delayed by the Centers of Medicare and Medicaid Services (CMS) until 2022, but that has done nothing too allay the fears of many people with disabilities and their families that it may be used as an excuse to discontinue funding for needed services and programs.

State Transition Plans (STP) are important for protecting the rights of people with disabilities to appropriate services in settings of their choice that assure integration into the larger community appropriate to the needs of the individual.

Michigan has identified settings that will undergo “heightened scrutiny” to assure that they meet the conditions of the settings rule before they are finally approved or rejected for HCBS funding. There are also grounds for legal challenges to the rule and commentary that explains why the Federal rule has been so controversial.

The following are links to resources and information to better understand what is at stake in the implementation of the federal settings rule:


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HCBS Advocacy

This is a Website supported by the Association of University Centers on Disabilities (AUCD).

From here you can find information regarding your state, including State Transition Plans that have received initial or final approval from CMS. So far only five states - Tennessee, Washington, Oklahoma, Kentucky, Arkansas - and the District of Columbia have final approval for their STPs.


According to HCBS Advocacy, although implementation of the rule has been extended to 2022, the deadline for final statewide transition plan approval is still March 2019.

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The Michigan Health and Human Services Website on the “Home and Community-Based Services Program Transition”

“As the Department develops new opportunities for stakeholders to provide feedback on this project, information about these events and opportunities will be published on this webpage. If you have any questions about this project, please send an email to HCBSTransition@michigan.gov.”

“Heightened Scrutiny”:

from CMSHome and Community-based Setting Requirements” - Heightened Scrutiny:

“Importantly, any setting regardless of location that has the effect of isolating individuals receiving Medicaid home and community-based services (HCBS) from the broader community of individuals not receiving HCBS is also presumed to be institutional, and therefore requires information from the state to overcome that presumption and describe how the HCBS settings requirements are met. States have an obligation to identify settings that are presumed institutional. …[The] final regulation …describes the process of “heightened scrutiny” that states can use to rebut or overcome this presumption. In particular, the regulations indicate that a settings described above “will be presumed to be a setting that has the qualities of an institution unless the Secretary determines through heightened scrutiny, based on information presented by the state or other parties, that the setting does not have the qualities of an institution and that the setting does have the qualities of home and community-based settings.”

Heightened Scrutiny in Michigan: 

In Michigan: Providers have been notified if they are subject to heightened scrutiny. Family members are encouraged to ask their provider about their status with regard to state implementation of the federal rule. 

from the HHS HCBS Transition Program:

“For those providers whom the department may submit for further review by the Centers for Medicare and Medicaid (CMS) there will be a public comment period. During this time all members of the public, including family members, will have an opportunity to share their opinions about whether the setting is home and community based. These comments will be taken into consideration before the department makes the final decision regarding submission to CMS.”

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May 9, 2017 letter from CMS extending the deadline for full implementation of the settings rule:

Extension of Transition Period for Compliance with Home and CommunityBased Settings Criteria”


“In recognition of the significance of the reform efforts underway, CMS intends to continue to work with states on their transition plans for settings that were operating before March 17, 2014 to enable states to achieve compliance with the settings criteria beyond 2019. Consistent with the preamble language, states should continue progress in assessing existing operations and identifying milestones for compliance that result in final Statewide Transition Plan approval by March 17, 2019. However, in light of the difficult and complex nature of this task, we will extend the transition period for states to demonstrate compliance with the home and community-based settings criteria until March 17, 2022 for settings in which a transition period applies. We anticipate that this additional three years will be helpful to states to ensure compliance activities are collaborative, transparent and timely.”

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From Together For Choice Blog, 11/14/17

Together for Choice Meets with CMS Administrator Seema Verma


"Together for Choice was invited to meet with Seema Verma, CMS Administrator, on November 1, to discuss the future of Medicaid. Approximately twenty other organizations participated in this invitation only meeting. The focus of the discussion was CMS’s Settings Rule which defines what constitutes a “community” setting and is therefore eligible for Medicaid waiver funding. I was the only person at the meeting who advocated for choice. I argued that the Settings Rule should be changed to honor the choices of individuals and their families regarding where to live and spend their days and to expand residential and day programming options. All of the other participants said that they did not want any changes to the Settings Rule or the CMS guidance under the Rule.

"Administrator Verma stated that she wanted Medicaid to be beneficiary focused and to put people first. She also said that she wanted to provide the states with more flexibility on administering Medicaid programs. In fact, she said that she wanted to give states an 'unprecedented level of flexibility.' She also acknowledged that individuals with disabilities receiving Medicaid should be viewed differently from non-disabled individuals receiving Medicaid. She wants the states to be creative and innovative in developing Medicaid programs and she repeatedly said that she wants less process and more focus on outcomes. In that connection, she said that CMS will be developing a Medicaid scorecard for states…

"Brian Neale, the head of Medicaid services at CMS also spoke. He indicated a preference for revising the CMS guidance to address the unintended consequences of the Rule rather than amend the Rule.

..."We will continue to advocate for choice by following up with Administrator Verma and Director Neale. Please join our voices to preserve choice and expand quality options by joining Together for Choice. Click HERE to join."

Scott Mendel
Chairman, Together for Choice


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Misericordia’s Developmental Training Program No Longer Subject to “Heightened Scrutiny”

2/2/2017

...“In early November, Illinois issued for public comment a draft of its transition plan. The plan listed all the facilities in the state that it believed should be subject to 'heightened scrutiny.' Misericordia’s DT program was one of the facilities on the list. The reason the state gave for subjecting Misericordia’s DT program to 'heightened scrutiny' was that it was located on a campus and was close to Misericordia’s ICF/DDs. We immediately asked all of our families with a family member living in a Misericordia CILA [Community Integrated Living Arrangement] (these are the individuals receiving “waiver” funding) to submit a public comment to HFS explaining how Misericordia’s DT program does not isolate their family member from the broader community.
  • We asked each family to include in its comment: all of the activities their family member engages in both on and off campus to show how full and integrated their life is. 
  • We asked the families to explain that their family member was engaging in the employment opportunities and other activities they choose. 
  • We also had the families point out that the state was applying the wrong standard in deciding that DT should be subject to heightened scrutiny. 
"We explained that the rule (quoted above) does not require heightened scrutiny just because a setting is located on a campus and is close to an ICF/DD. In fact, the CMS rule says nothing about location. Instead, heightened scrutiny is limited to settings that isolate individuals. By having each family explain how their family member is not isolated, we were able to show that DT did not come within the settings that required heightened scrutiny.”…

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Legal Vulnerabilities of CMS’s Regulation of Home and Community-Based Settings 

from Covington and Burling, LLP, 1/17/17

“We believe that both the regulations and subsequent CMS guidance can be challenged as exceeding CMS’s authority. The effect of the regulations is to limit the choices of living situations for individuals with disabilities, and to replace the preferences of individuals, families and guardians with the preferences of CMS as to which setting best suits the needs of a particular individual.” 

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The Federal Government’s Quiet War on Adults with Autism 

by Jill Escher, 4/19/16

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The Coalition for Community Choice and the Madison House Autism Foundation have been following the implementation of the Federal settings rule since 2014. They have extensive knowledge of State Transition Plans and the effort to preserve innovative housing solutions for people with autism and other developmental disabilities. For questions, see contact information here.

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Another threat to replacing the preferences of individuals and their families and guardians with the preferences of CMS and federally-funded advocacy organizations, is the promotion of Supported Decision-Making (SDM). SDM is based on the belief that all people with disabilities can make and communicate decisions for themselves regardless of the nature or severity of their disabilities. Many SDM advocates refuse to acknowledge that disability can impair an individual's capacity to make decisions and they support the total elimination of guardianship. 

See Guardianship vs. Supported Decision-Making

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"The idea that one residential model is appropriate for the entire spectrum of intellectual ​and developmental disability — from college-educated self-advocates to profoundly impaired individuals at risk of detaching their own retinas or bolting into traffic — is patently absurd."

by Amy Lutz in "Myth - Truth", an article on Pennsylvania's proposed bill to close all Intermediate Care Facilities for Individuals with Intellectual Disabilities

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The Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision protect people with disabilities from discrimination in their choice of residential settings, but they do not exclude the choice of institutional settings necessary for individuals to receive the services they need, nor do they ban congregate settings of more than 4 individuals with disabilities receiving services in a group setting.

See also, 

and

“The Olmstead Decision has been Misinterpreted”


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HCBS Update as a Word Document

Friday, November 17, 2017

Michigan Family Connections Fall 2017 News

Michigan Family Connections Fall 2017 newsletter is a publication of the Michigan Family to Family Health Information Center and the Family Center for Children and Youth with Special Health Care Needs Family [phone Line 800-359-3722]. Here are two items that will help families seeking medical and other benefits for their special needs children:

ACA OPEN ENROLLMENT IS GOING ON NOW—DON’T WAIT! 


With so much uncertainty around the Affordable Care Act, some individuals and families are waiting to see what happens. But it is important to note that there are important deadlines to meet if you need to purchase coverage. Don’t wait and take a chance on missing out on enrollment.

The Kaiser Foundation recently did an analysis on individuals eligible for Marketplace insurance. The results show that 54% or 5.9 million people who are uninsured and eligible to purchase coverage on the Marketplace would pay less in premiums than they would owe as a penalty for lacking coverage.

Within that, about 4.5 million (or 42%) could obtain a bronze level plan at no cost in 2018, after taking income-related premium tax credits into account. For more information on the results of this analysis, go to the Kaiser Foundation website here

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For more information, or for assistance in finding help with enrollment, please visit: www.healthcare.gov .

December 15, 2017—Enrollment closes

For individuals who enroll during this open enrollment period, coverage will begin on Jan 1, 2018.


MICHIGAN MILITARY FAMILY SPECIAL NEEDS COALITION

The Michigan Military Family Special Needs Coalition was recently formed as a partnership between the State Family Program Office, and Michigan military families with special needs. The purpose of the Coalition is to improve support and gather resources for all military and veteran families in Michigan requiring medical or educational consideration for family members. A family member with special needs is defined as a:

  • Spouse, child or incapacitated adult, who, regardless of age, has special medical needs and requires medical care for a chronic condition, receives ongoing services from a medical specialist or has significant behavioral health concerns. 
  • Child (birth through age 21) with special education needs who is eligible for, or receives, either early intervention services through an individualized family service plan, or special education services through an Individualized Education Program. 
The Coalition is seeking any Michigan military service members, veterans, or family members who want to assist in improving support and resources for our Michigan military and veteran families with special needs.

Please share this information with any military or veteran family with special needs that may be interested in participating. Any service members or family members interested may contact Jess Ulrey at (517) 481-8301. You can also visit their Facebook page at: https://www.facebook.com/mmfsncoalition/  .

Wednesday, November 8, 2017

2017 Election results: Washtenaw County millages supporting special ed and Community Mental Health win and other news

Both Washtenaw County millages won by a wide margin in yesterday’s election.

In other news, the Michigan legislature seems to be losing its mind depending on how you feel about guns in schools and protecting wildlife.

According to a Detroit Free Press article, “Michigan bills would allow concealed guns in schools, churches” by Kathleen Gray, 11/7/17:


“In the wake of mass shootings in Las Vegas and Texas that left dozens of people dead or injured, a Michigan Senate committee approved bills Tuesday that will allow gun owners to carry concealed weapons in gun-free zones such as schools, churches, day care centers, bars, dorms and stadiums.”

…”The bills taken up in the Senate Government Operations Committee passed on a party-line vote with Republicans supporting the three-bill package and Democrats opposing it. The bills would also close the open-carry loophole, effectively barring gun owners from openly carrying their weapons in gun-free zones.” This was a concession to school districts that claim that seeing people carrying weapons in school upsets students, parents, and staff to the point where they sometimes have to shut down.

Emily Durbin, Michigan chapter president of Moms Demand Action, responded:

”Two days after the latest shooting, we’re here not having a conversation about keeping guns away from domestic abusers, increasing background checks or banning bump stocks," she said. "Instead, we're urgently discussing what the gun lobby wants and that's a desire to have more guns in more places, no questions asked."

Governor Rick Snyder vetoed a similar bill in 2012, four days after a gunman slaughtered 20 children in an elementary school in Newtown, Connecticut.

“SB 584-586 — could come up for a vote in the Senate on Wednesday, and will likely pass the chamber, where Republicans hold a 27-11 majority.” 

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In addition,..."The state House of Representatives, in a voice vote and without debate, …passed a resolution urging the state Natural Resources Commission to establish a sandhill crane hunting season in Michigan." ---“‘Ribeye of the sky?' House recommends sandhill crane hunt in Michigan”, by Keith Matheny, Detroit Free Press, 10/18/17.

This has little to do with developmental disabilities, but a lot to do with how government fails to address important issues and sometimes seems to just want to aggravate the opposition for no particular reason. I doubt there has been a groundswell of support from hungry citizens who can’t wait to sample sandhill crane breast meat.

The Phyllis Haehnle Memorial Audubon Sanctuary near Jackson, Michigan has documented the successful repopulation of Sandhill Cranes in Michigan from near extinction to abundance throughout the Mississippi flyway. Since 2009, however, the fall population count has leveled off in Michigan and the birds reproduce in low numbers. The birds are protected under the federal Migratory Bird Treaty Act, but farmers can apply to the U.S. Fish and Wildlife Service for special permits to eradicate birds damaging their crops.

Is a Sandhill Crane hunt necessary, or could we all show a little restraint in the protection of native bird species?




Monday, November 6, 2017

Iowa privatization of Medicaid generates complaints

As Iowa experiments with the privatization of its Medicaid program, complaints have spiked. Is Michigan paying attention?

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As Medicaid Managed Care Proliferates, So Do Complaints


by Clay Masters, Iowa Public Radio | November 6, 2017

Iowa is one of 38 states that radically changed the way it runs Medicaid over the past few years. The state moved about 600,000 people on the government-run health program into care that is managed by for-profit insurance companies.

The idea is that the private companies would save the state money, but it has been a rocky transition in Iowa, especially for people like Neal Siegel.

Siegel is one of six Iowans with disabilities suing the state, alleging that Medicaid managed care, as it is known, deprives thousands of Iowans with disabilities the right to live safely in their homes.
Medicaid serves people with disabilities, low-income people and people in nursing homes. A combination of federal and state funds pays for it. It covers 74 million people across the country these days, about half of whom are in Medicaid managed care.

Siegel, a former financial consultant, was in a hit-and-run bicycle crash four years ago that left him with a severe brain injury. He uses a wheelchair and can barely speak.

“I would probably put Neal at about 98 percent cognitive (awareness) of what’s going on around him, but unfortunately (he’s) not able to articulate it,” said Siegel’s girlfriend, Beth Wargo. “So it’s being trapped inside your own body.”

After the accident, Siegel qualified for Medicaid. He lived in a rehabilitation center for a while, and the lawsuit, filed in U.S. District Court in June, says he was the victim of abuse and neglect while living there.

Eventually he moved home with Wargo, where he’s totally reliant on caregivers to assist him with all activities of daily life.

Then last year, Wargo said, they got a letter in the mail from AmeriHealth Caritas, the company that manages his care. Siegel’s budget for home help had been slashed by 50 percent, Wargo said. Siegel’s face lit up as Wargo talked about the lawsuit, and he managed to say, “Oh yeah,” when she mentioned how happy they were that they could be part of it.

Cyndy Miller is the legal director with Disability Rights Iowa, the advocacy group that spearheaded the lawsuit.

“The system is too stressed right now with the way it’s being managed, and it’s not healthy for individuals with chronic or serious disabilities,” said Miller.

According to the lawsuit, the company claimed that spending on Siegel’s case was cut because it had exceeded a limit set in state policy. A spokesman for AmeriHealth Caritas said the company could not comment on ongoing litigation. The state has asked for the lawsuit to be dropped.

In addition to the suit, complaints about Medicaid from hospitals, doctors and patients have spiked in Iowa.

Iowa’s Department of Human Services Director Jerry Foxhoven defended moving the entire Medicaid population to managed care. He said more taxpayer dollars will be saved under private management.

But he said his agency is willing to make changes, especially for people like Neal with serious disabilities.

“Everything’s always on the table. We’re always looking at everything to say, ‘How do we best serve the people we’re trying to serve and be the best stewards of taxpayer dollars?'” Foxhoven said.

For their part, the three companies with contracts in Iowa said in statements that the first 18 months of Medicaid managed care have been successful. But they also have said to state officials that reimbursement rates were based on deeply flawed cost estimatesprovided to them before the project began.

They are now negotiating to get millions of dollars more in state funding.

So where’s the savings? So far, no state has actually done a comprehensive review of whether private companies actually save Medicaid dollars, said Kelly Whitener, an associate professor with Georgetown University who studies managed care.

“You’d really need to be able to see, are you saving money overall or not, and if you are spending less money, are you suppressing services that are needed? Or are you really finding efficiencies and only delivering care that families really need?” said Whitener.

For the moment, those questions don’t have definitive answers.

Meanwhile, Iowa has to balance its books. Republican Gov. Kim Reynolds had to tap more than $260 million of the state’s reserve fund this year, and officials expect next year’s budget will be even tougher to negotiate. Medicaid funding is likely to continue to be a large part of the discussion.

This story is part of a reporting partnership with NPR, Iowa Public Radio and Kaiser Health News. Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

Elections Matter: VOTE November 7th, 2017


Washtenaw County, Michigan, has two important issues on the ballot affecting people with disabilities and people with mental illness.

Voting Information

The Ann Arbor League of Women Voters website can provide you with the information you need to vote. Enter your address and zip code and follow the links to check on your voter registration, the exact wording of ballot issues, and more.

Millage Elections

A mill is a property tax of one tenth of a cent ($0.001) or one-thousandth of a dollar of taxable value. A tax rate of one mill raises $1 per $1,000 of taxable value. The taxable value cannot be higher than 50% of the State equalized value (true cash value) of the property.


[For easily distractible people, who need to know more about this nowhere  is a link to a paper from the Michigan Senate Fiscal Agency.]

Washtenaw Intermediate Special Education Millage 

This is a proposal to renew a special education millage for another 8 years. See the Ann Arbor News report on the millage election:

“The millage would provide about $15.2 million in 2018 to fund special education services provided by Washtenaw County's public schools. Because this is a renewal of the existing millage, there is no additional cost to taxpayers.

“In all, Washtenaw County schools spend $124 million each year on special education services for more than 6,500 students, according to a presentation on the millage request from the WISD.”…


Washtenaw County Community Mental Health and Public Safety Preservation Millage


This is an NPR program by Jorge Avellan on 11/2/17 about the CMH millage: “Washtenaw County Voters To Decide Community Mental Health And Public Safety Proposal On Nov. 7th”

NAMI (National Alliance on Mental Illness), Washtenaw County supports the CMH Millage

NAMI Washtenaw County supports the Community Mental Health and Public Safety Preservation Millage on the November 7, 2017 ballot. NAMI WC focuses on mental health issues and their intersection with public safety, but we also support the complete millage, including the need for reliable funding for public safety operations and the need to rebate funds to communities which have their own public safety agencies.

Washtenaw County faces several crises among people with mental illnesses who are not eligible for Medicaid and who are unserved as a result of state budget cuts. State funding for Community Mental Health (CMH) has dropped by 60%, from $6.5 million to $2.7 million. CMH has lost 70 staff members. CMH has discharged 350 people and has turned away others seeking help. CMH cannot use other funds to make up for the cuts.

Here are the results from these cuts to the CMH budget:

1. CMH cannot respond to the demands from the deadly and growing mental health crisis from suicides and opioid use.

2. Lack of CMH services has resulted in costly hospital stays. Other services in the community have been stressed because they cannot serve such serious problems.

3. We see its effects of budget cuts on the homeless population.

4. People with mental illnesses are being incarcerated in the County Jail unnecessarily.

The millage will raise $5.86 million to fund:

1. Better coordination with the Sheriff’s Office and services which will divert people with mental illness from unnecessary jailing and harm.

2. Four specific types of service

  • Crisis services: including the suicide and opioid epidemics 
  • Stabilization services: for those who do not currently qualify for services— 
  • Prevention services: including mental health awareness, prevention, and early intervention programming with community partners, including schools, law enforcement and other first responders, and health care providers. 
  • Jail Services: Including mental health and substance abuse assessment and treatment inclusive of counseling and psychiatric services and prisoner re-entry. 
....Call or email NAMI WC at 734-994-6611, office@namiwc.org. Our website: namiwc.org

Saturday, October 14, 2017

Health Care in Flux: Executive Orders and Federal Regulations

President Trump, with great flourish, signed an Executive Order on October 12, 2017 that, if and when it is implemented, will expand lower-cost insurance options under the Affordable Care Act or Obamacare.

This action is separate from the decision by Trump to cut off payments to insurance companies to subsidize moderate to lower income policy holders who buy insurance through the ACA exchanges. This action has an immediate effect, unlike the signing of the Executive Order that calls for changes to healthcare regulations. The process of changing federal regulations can take months to years to implement.

An article in Kaiser Health News (KHN), “Trump’s Order Advances GOP Go -To Ideas To Broaden Insurance Choices, Curb Costs”, by Judy Appleby, 10/12/17, explains the intent of this particular order as well as other details including the pros and cons:

“The Trump administration Thursday advanced a wide-ranging executive order aimed at expanding lower-cost insurance options, allowing employers to give workers money to buy their own coverage and slowing consolidation in the insurance and hospital industries.

“Critics said that, if implemented, the changes could result in more bare-bones coverage and pull healthier people out of the already struggling insurance markets, leading to higher premiums for those who remain in more-regulated coverage.

“President Donald Trump’s action, which will not take effect in time to affect the upcoming open enrollment for coverage in 2018, signals a shift in the administration’s strategy, which relied on Congress to repeal the Affordable Care Act. Trump is now using the force of his executive rule-making authority to implement long-favored GOP policy alternatives.” [emphasis added]


Before there is widespread panic that millions will immediately lose their health insurance, the good news is that it will take some time before that happens and perhaps agreements between Congress and the President to shore up Obamacare will occur before this policy can go into effect. The bad news is that judging by the current state of this debate, such an agreement is highly unlikely.

What is an Executive Order?

This is from Wikipedia:


Executive Orders are presidential directives issued by United States Presidents and are generally directed towards officers and agencies of the U.S. federal government. Executive orders may have the force of law, if based on the authority derived from statute or the Constitution itself. The ability to make such orders is also based on express or implied Acts of Congress that delegate to the President some degree of discretionary power (delegated legislation).[1]

Like both legislative statutes and regulations promulgated by government agencies, executive orders are subject to judicial review and may be overturned if the orders lack support by statute or the Constitution.[2] Major policy initiatives require approval by the legislative branch, but executive orders have significant influence over the internal affairs of government, deciding how and to what degree legislation will be enforced, dealing with emergencies, waging wars, and in general fine-tuning policy choices in the implementation of broad statutes.


If you have doubts about whether Wikipedia is an authoritative source of information, that depends on the subject. This entry jibes with what I have read before about executive orders and I’m sure there are many other authoritative sources to confirm the information.


How does the federal rule making process work and what does this have do with you?

There’s nothing like a civics lesson to take your mind off the horrifying prospect that your family member with a disability and who-knows-how-many pre-existing conditions, could be priced out of health insurance or denied it altogether.

One way that people with disabilities and their families can have an impact on proposed changes to healthcare is through opportunities afforded for public comment during the rule making process.


The Guide to the RulemakingProcess”, prepared by the Office of the Federal Register, is a handy tool for individuals and organizations that want to follow and comment on proposed changes to federal regulations.

Here is another handy definition from Wikipedia:

“The Federal Register, abbreviated FR or sometimes Fed. Reg., is the official journal of the federal government of the United States that contains government agency rules, proposed rules, and public notices.[1] It is published daily, except on federal holidays. The final rules promulgated by a federal agency and published in the Federal Register are ultimately reorganized by topic or subject matter and codified in the Code of Federal Regulations (CFR), which is updated annually.”

Here are a few excerpts from “The Guide to the Rulemaking Process” that will help assure your participation:

How does an agency involve the public in developing a proposed rule?


An agency may take some preliminary steps before issuing a proposed rule. They gather information through unstructured processes and informal conversations with people and organizations interested in the issues. If an agency receives a “Petition for Rulemaking” from a member of the public, it may decide to announce the petition in the Federal Register and accept public comments on the issue.

An agency that is in the preliminary stages of rulemaking may publish an “Advance Notice of Proposed Rulemaking” in the Federal Register to get more information. The Advance Notice  is a formal invitation to participate in shaping the proposed rule and starts the notice‐and-comment process in motion.

Anyone interested (individuals and groups) may respond to the Advance Notice by submitting comments aimed at developing and improving the draft proposal or by recommending against issuing a rule. Some agencies develop proposed rules through a negotiated rulemaking. In this process, an agency invites members of interested groups to meetings where they attempt to reach a consensus on the terms of the proposed rule. If the participants reach agreement, the agency may endorse their ideas and use them as the basis for the proposed rule.


What is the role of the President in developing a proposed rule?


Before a proposed rule is published in the Federal Register for public comment, the President, as head of the Executive branch, may take the opportunity to review the rule. The President is assisted by the Office of Information & Regulatory Affairs (OIRA), which analyzes draft proposed rules when they are “significant” due to economic effects or because they raise important policy issues. For significant rules, the agency must estimate the costs and benefits of the rule and consider alternate solutions….


What is the purpose of the proposed rule?

The proposed rule, or Notice of Proposed Rulemaking (NPRM), is the official document that announces and explains the agency’s plan to address a problem or accomplish a goal. All proposed rules must be published in the Federal Register to notify the public and to give them an opportunity to submit comments. The proposed rule and the public comments received on it form the basis of the final rule.

What is the time period for the public to submit comments?
 
In general, agencies will specify a comment period ranging from 30 to 60 days in the “Dates” section of the Federal Register document, but the time period can vary. For complex rulemakings, agencies may provide for longer time periods, such as 180 days or more. Agencies may also use shorter comment periods when that can be justified.

Members of the public may request that the agency allow more time to submit comments, and agencies may consider late‐filed comments, if their decision‐making schedule permits it. Commentors should be aware that agencies generally are not legally required to consider late filed comments. Agencies usually provide information in the proposed rule and/or their procedural rules indicating whether they will consider late‐filed comments.


Do agencies have additional options for gathering public comments?


During the comment period, an agency may also hold public hearings where people can make statements and submit data. Some agencies operate under laws that require rulemaking hearings. Others may hold public meetings to collect more information or to help affected groups get a better understanding of the proposed rule. Many agencies are beginning to use webcasts and interactive Internet sessions to broaden the audience attending public meetings.

After the comment period closes, an agency may establish a second period for reply comments (comments that respond to prior comments). A reply period is not required by law. The reply comment period enables people to respond to comments that agencies received at the end of comment period, creating more of a public dialog.


How do public comments affect the final rule?

The notice‐and‐comment process enables anyone to submit a comment on any part of the proposed rule. This process is not like a ballot initiative or an up‐or‐down vote in a legislature. An agency is not permitted to base its final rule on the number of comments in support of the rule over those in opposition to it. At the end of the process, the agency must base its reasoning and conclusions on the rulemaking record, consisting of the comments, scientific data, expert opinions, and facts accumulated during the pre‐rule and proposed rule stages.

To move forward with a final rule, the agency must conclude that its proposed solution will help accomplish the goals or solve the problems identified. It must also consider whether alternate solutions would be more effective or cost less.

If the rulemaking record contains persuasive new data or policy arguments, or poses difficult questions or criticisms, the agency may decide to terminate the rulemaking. Or, the agency may decide to continue the rulemaking but change aspects of the rule to reflect these new issues. If the changes are major, the agency may publish a supplemental proposed rule. If the changes are minor, or a logical outgrowth of the issues and solutions discussed in the proposed rules, the agency may proceed with a final rule.


How is the final rule structured?

Final rules also have preambles, including the summary, effective date, and supplementary information. The final rule published in the Federal Register begins with a “Summary” of the societal problems and regulatory goals and explains why the rule is necessary.

Every final rule must have an “Effective Date.” However, any portions that are subject to later approval under the Paperwork Reduction Act or are subject to Congressional approval may be excepted from that effective date. The “Dates” caption in the Federal Register may also contain compliance or applicability dates.

The agency must state the “basis and purpose” of the rule in the “Supplementary Information” part of the preamble. This statement sets out the goals or problems the rule addresses, describes the facts and data the agency relies on, responds to major criticisms in the proposed rule comments, and explains why the agency did not choose other alternatives.

The agency must identify its legal authority for issuing the rule and publish the regulatory text in full. The regulatory text sets out amendments to the Code of Federal Regulations (CFR). Each amendment begins with instructions for changing the CFR.

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Despite the promise of public involvement in federal rulemaking, there has not been any inclination on the part of the President or the majority in Congress to solicit opinions or advice from the general public, or even from people directly affected by proposed changes in healthcare policy. It is hard to tell where all this leading. The best advice is to Expect the Unexpected.

Wednesday, October 11, 2017

Michigan: Oakland County Town Hall Meeting on future of mental health services, including services for DD

This notice comes from Ed Diegel of Advocates for Persons with Developmental Disabilities in Wayne County at ddadvocates@gmail.com .

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Background

The Michigan legislature approved a revised version of Section 298 as part of Public Act 107 of 2017. Under the revised Section 298, the Michigan legislature directed the department [of Health and Human Services] to develop and implement up to three pilots and one demonstration model to test the integration of physical health and behavioral health services. That work is proceeding.

Open Invitation--You are Invited to one of several open meetings to be held throughout the state. Following is information concerning a meeting to be held October 26 in Oakland County.

Learn Issues and Make Your Voice Heard!!!


Oakland County Mental Health Town Hall Meeting
Thursday, October 26, 2017, 7:00 PM
Beaumont Hospital, Administration Auditorium
3601 13 Mile Road

Royal Oak, MI 48073

Open at 6:30PM


Each county town hall meeting will have a panel of state legislators of that county to hear from advocates, community mental health leaders and concerned citizens regarding their concerns to be addressed by mental health reform.

Purpose:

  • To express to policy makers your personal concerns that we properly fund, govern and manage, more and better mental health services, and
  • To advocate for a publicly managed and accountable mental health system, that promptly and effectively responds to persons in need of services, ensures that persons can meet their basic needs for housing, food, clothing, transportation and social relationships, and promotes and sustains recovery that enables recipients of services to be the best they can be.
Persons wishing to share their stories are encouraged to bring written statements which will be collected and shared with other policy makers following the event. Public comments will be limited to 5 minutes each to enable many people to express their concerns. If you choose not to speak or you can’t attend, you may e-mail your comments to fred.a.cummins@gmail.com

Everybody is welcome.

Current Sponsors and Growing:

Alliance for the Mentally Ill of Oakland County
Mental Health Association in Michigan
Michigan Protection and Advocacy Service
Michigan Disability Rights Coalition
Parents Alliance of Metro Detroit
ARC of Michigan
ARC of Oakland County
MICHUHCAN
Michigan Nurses Association
UAW Region 1
UAW Region 1A
UAW Region 1A, Retiree chapter
UAW Local 412
Mich. AFSCME Council 25
Michigan State AFL-CIO
Michigan Alliance for Retired Americans
South East Michigan Jobs with Justice
Michigan Alliance to Strengthen Social Security and Medicare
Michigan United
Alliance for Retired Americans
Michigan Association of Community Mental Health Boards
Detroit-Wayne Mental Health Authority
Oakland Community Health Network
Macomb County Community Mental Health

For more information, call 248-203-1998.

Monday, October 9, 2017

Madison House Autism Foundation presentation to the Interagency Autism Coordinating Committee





This is a videocast of a presentation by the Madison House Autism Foundation (MHAF) on housing options for adults with autism, including planned and intentional communities. It was presented to the Interagency Autism Coordinating Committee (IACC) at their July 2017 meeting.

Here is an overview of the IACC, a federal committee that advises the Secretary of Health and Human Services on autism issues:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The committee reconvened in November 2015 to begin a new session under the Autism CARES Act.

The IACC mission is to:

  • Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
  • Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
  • Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings page.

Here is a link to the full meeting schedule of the July meeting of the IACC. The presentation by JaLynn Prince of MHAF begins at 3:52:15 and a presentation by Desiree Kameka on the Autism Housing Network (AHN) begins at 4:19:52. The AHN Website includes links to autism housing projects nationwide and answers questions about housing models and resources.

Friday, October 6, 2017

People with severe autism with nowhere to go

This is a long article from Kaiser Health News (KHN), a nonprofit news service committed to in-depth coverage of health care policy and politics. KHN generously allows republication of most of their articles without charge. 

In the past I have covered issues having to do with deinstitutionalization, the diminishing number of choices and living situations available to people with disabilities, especially those with severe and profound intellectual and developmental disabilities (IDD), and the destructive effect that has on people with IDD and their families. This growing crisis has been exacerbated by federally-funded advocacy groups who promote the downsizing and closure of programs for the most severely disabled in the name of "Inclusion" and a perverse understanding of civil rights. I will address this and provide links to other sources in a future blog post.--JRB 

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Nowhere to Go: Young People with Severe Autism Languish in Hospitals

by Christina Jewett
September 26, 2017

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals, sometimes sedated, restrained or confined to mesh-tented beds, a Kaiser Health News investigation shows.

These young people — who may shout for hours, bang their heads on walls or lash out violently at home — are taken to the hospital after community social services and programs fall short and families call 911 for help, according to more than two dozen interviews with parents, advocates and physicians in states from Maine to California.

There, they wait for beds in specialized programs that focus on treating people with autism and other developmental disabilities, or they return home once families recover from the crisis or find additional support.

Sixteen-year-old Ben Cohen spent 304 days in the ER of Erie County Medical Center in Buffalo. His room was retrofitted so the staff could view him through a windowpane and pass a tray of food through a slot in a locked door. His mother, who felt it wasn’t safe to take him home, worried that staff “were all afraid of him … [and] not trained on his type of aggressive behaviors.”

The hospital “is the incredibly wrong place for these individuals to go in the beginning,” said Michael Cummings, the Buffalo facility’s associate medical director and a psychiatrist who worked on Ben’s case. “It’s a balancing act of trying to do the … least harm in a setting that is not meant for this situation.”

Nationally, the number of people with an autism diagnosis who were seen in hospital ERs nearly doubled from 81,628 in 2009 to 159,517 five years later, according to the latest available data from the federal Agency for Healthcare Research and Quality. The number admitted also soared, from 13,903 in 2009 to 26,811 in 2014.

That same year, California’s state health planning and development department recorded acute-care hospital stays of at least a month for 60 cases of patients with an autism diagnosis. The longest were 211 and 333 days.


The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the shortcomings of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that dwindled long ago, and then came the Great Recession of 2008, when local, state and federal budget woes forced sharp cuts in developmental and mental health services.

“As more children with autism are identified, and as the population is growing larger and older, we see a lot more mental health needs in children and adolescents with autism,” explained Aaron Nayfack, a developmental pediatrician at Sutter Health’s Palo Alto Medical Foundation in California who has researched the rise in lengthy hospitalizations. “And we have nowhere near the resources in most communities to take care of these children in home settings.”

So, families struggle — with waiting lists for programs, low pay for government-supported in-home help and backlogged or ineffective crisis support. Often they’ve faced some of these challenges for years. Autism is a neurodevelopmental disorder typically diagnosed at a young age and characterized by impaired communication, difficulty with social interaction and repetitive behaviors that fall along a spectrum of mild to severe.

Adolescents and young adults with severe autism may still have the mental age of a child, and short-term care to stabilize those in crisis who are nonverbal or combative is practically nonexistent. Longer-term care can be almost as hard to find. It must be highly specialized, usually involving intensive behavioral therapy; someone with severe autism gets little benefit from traditional psychiatric services.

General hospitals “are not really equipped to handle someone who is autistic,” said Mark De Antonio, director of adolescent inpatient services at Resnick Neuropsychiatric Hospital in Los Angeles. Several times a month, he said, he hears about patients with no immediate care options being medicated and sedated as they’re held. “It’s a huge problem.”

In New Hampshire this summer, 22-year-old Alex Sanok spent a month in Exeter Hospital after he became violent at home, breaking windows and hurling objects at walls. His mother called 911, and paramedics spent half an hour trying to calm him before restraining him.

At the hospital, his wrists and ankles were strapped to an ER bed for the first week, and he spent several more weeks in a private room before he could be transferred, according to his mother, Ann Sanok. State agencies that handle developmental disabilities and mental health offered little help, she said.

As the days passed, she said, she and her husband wondered: “What if [Alex] escalates again, what are we doing to do? We were getting no answers. Everyone seemed to kick the can down the road.”

Exeter Hospital said in a statement that its policy is not to use restraints unless there is an “imminent threat to patient or staff safety” and that any use is reviewed hourly. Sanok was moved in June to a special-needs residential school in Massachusetts, where his mother said he is doing well.

The federal government does no routine tracking of how autism is treated in ERs, but many experts say the problem of lengthy and inappropriate stays is nationwide and growing. Kaiser Health News identified some of the more extreme cases through interviews with autism and disability advocates, physicians and families in California, New Hampshire, New York and six other states: Arizona, Connecticut, Maine, Maryland, Michigan and Rhode Island.

Nancy Pineles, a managing attorney with the nonprofit group Disability Rights Maryland, said a group home took one young adult to a Baltimore ER earlier this year after he hit a staff member. And that’s where he remained for several weeks before the hospital moved him to a room in its hospice wing, she said — not because he was dying, but because there was nowhere else for him to go.

Such cases have been “on the increase,” Pineles said. “People with autism and more intense behavioral needs are just being frozen out.”

In Connecticut, the head of the state’s Office of the Child Advocate told lawmakers during a hearing on disability issues in May that the problem had reached a “crisis” level.

Private-insurance data underscore the concerns. In a study published in February in the Journal of Autism and Developmental Disorders, researchers from Pennsylvania State University found that young people ages 12 to 21 with autism are four times more likely to go to the emergency room than peers without autism. Once there, they are 3½ times more likely to be admitted to a hospital floor — at which point they stay in the hospital nearly 30 percent longer.

The analysis, based on a sample of 87,000 insurance claims, also showed that older adolescents with autism are in the ER more than their younger counterparts. The percentage of their visits associated with a mental health crisis almost doubled from 2005 to 2013.

“You’re looking at an increase in unmet need,” said Nayfack, who with Stanford University colleagues documented a similar trend from 1999 to 2009 in hospital admissions for young Californians with autism. By contrast, they found, hospitalization rates held steady during that decade for children and teens with Down syndrome, cerebral palsy and other diagnoses.

Tyler Stolz, a 26-year-old woman with autism and a seizure disorder, was stabilized after a few weeks in a Sacramento hospital, yet she remained there 10 months, according to Disability Rights California, an advocacy group that described her case in its 2015 annual report.

Ultimately, Mercy San Juan Medical Center went to court to demand that Stolz’s public guardian move her. The court filing noted that Stolz “previously harmed hospital staff” and that “a security officer is posted to the patient’s room 24/7.”

Although her conditions no longer required her hospitalization, they still “represent dangers to defendant and possibly to others if she were discharged to the community,” the facility contended. “There is no safe place for the client to go.”

The advocacy nonprofit helped place Stolz at a Northern California center that offered intensive behavioral therapy, recounted Katie Hornberger, its director of clients’ rights. The medical center did not respond to a request for comment, but two years after an investigator found Stolz in a bed covered by a mesh tent, the case remains vivid in Hornberger’s mind.

“I don’t believe we put people in cages,” she said.

New York Stands Out

Some of the longest hospital stays in the nation, averaging 16.5 days, occur in New York state.

James Cordone, 11, spent seven weeks in a Buffalo, N.Y., children’s hospital in a tent-like bed, with a hospital receptionist or instrument sterilization tech in his room at all times, his mother said. The difficulty families like hers face is “the dirty little secret no one wants to talk about.”

Debbie Cordone of Cheektowaga, N.Y., was a retired police dispatcher who had raised her own children when she and her husband adopted James as a toddler. Diagnosed with autism at 3, James was a boy with a bright smile who loved to cuddle, she said. At 8½, James began to grow combative. To ward off injury, the Cordones locked up their knives and forks and put away glass picture frames.

But then their son started head-banging — a problem with some children who have a severe case of autism. The Cordones’ house bears the scars of his pain, including holes in the drywall and a shattered window.

On his 9th birthday, in December 2014, James went into a rage, Cordone said. It took four adults to restrain him.

“He was trying to put his head through the window, sweating profusely,” she said. “He was not there. It was a blank stare.”

The family called 911. James was taken to the Women & Children’s Hospital of Buffalo, where he was sedated on and off for 13 days. He went home, but a fit of rage a few months later landed the young boy in the same hospital for seven weeks in March 2015. “We couldn’t ride out the storm any longer,” Cordone said.

Cordone said her son lived out those weeks in a “Posey Bed,” which resembles a child’s playpen propped on top of a hospital bed. During that time, she joined her adult children in a social media campaign to pressure her insurer to pay for intensive behavioral therapy.

The family prevailed, and James went to a center in Baltimore where staff — three counselors for his case alone — focused on his communication skills and adjusted his medication. He now lives in a group home near the Cordone family. He is “a success story,” Cordone said, albeit a rare one among children with severe autism.

“This is a crisis,” she said, “and no one is recognizing it.”

Women & Children’s Hospital of Buffalo did not return calls seeking comment.

Mary Cohen, who also lives in the Buffalo area, has endured a similar struggle as a single mother. Ben’s 6-foot-1, 240-pound presence dwarfed her petite frame.

She began locking herself in a basement room to escape his outbursts, while still monitoring him via cameras she’d installed throughout the house to make sure he was safe. As the lock-ins became more frequent, she realized, “I can’t keep going like this.” She found a nearby group home, covered by his disability and Medicaid payments, that could accommodate Ben.

On Aug. 1, 2016, it all imploded. Medication changes and an ear infection triggered a rage, Cohen said, and Ben hurt one of the staff members. Someone called 911, he was taken to the psychiatric emergency room at Erie County Medical Center, and a waiting room there is where he lived until early this summer.

“Staff was on the other side of the window watching him 24 hours around the clock,” Cohen said.

Though a 304-day stay is a record there, cases like this have surged at the hospital, said Cummings, its executive director of behavioral health. They spurred him to launch a grant-funded home-visit program aimed at keeping families with autistic children from reaching a breaking point. He and his clinical partner have counseled nearly 400 families to help manage their youngsters’ medications and find services, and their ER visits have dropped by nearly 50 percent, he said.

“It’s money best spent now, because you’re going to spend it in the end,” stressed Scott Badesch, president of the Autism Society. The organization, well aware of what Badesch calls hospital “warehousing,” is pushing lawmakers nationally to spend more on behavioral counseling and in-home support for families.

A bed finally opened up for Ben at Baltimore’s Kennedy Krieger Institute — a private, highly regarded facility that offers intensive therapy, psychiatry and family coaching. Cohen held out for a placement there, hoping the staff could turn Ben’s behavior around. The teen and his mother made the 360-mile trip in June by ambulance and plane.

“I want to do the right thing for him,” Cohen said. “Because one day I’m not going to be there for him.”

KHN’s coverage of children’s health care issues is supported in part by a grant from The Heising-Simons Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

ChristinaJ@kff.org | @by_cjewett

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.