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.

Wednesday, October 4, 2017

Comments to the U.S. Dept. of Education on Regulatory Reform: "Inclusion"

The following are my comments to the U.S. Department of Education request for comments on "Enforcing the Regulatory Reform Agenda E.O. 13777"

by Jill Barker, Ann Arbor, Michigan

With all the emphasis on children with disabilities being served in regular classrooms, usually referred to as “Inclusion”, there needs to be clarification that IDEA and its regulations assure all children with disabilities appropriate educational services and placements.


I have two adult sons, 32 and 41 years old, who have profound intellectual and developmental disabilities. They both attended High Point School in Ann Arbor, a school that specialized in students with the most severe and complex disabilities in Washtenaw County, Michigan. Regular classrooms were in no way appropriate for them, even with special supports and accommodations. At High Point, they experienced the best care and educational opportunities available in a loving and supportive community. 

I have no regrets, but I know the pressure has been on school systems for many years to eliminate schools like High Point in the name of an erroneous and misplaced desire for all students to be “included”.

The following is an article I wrote for The DD News Blog in celebration of my son Danny’s 40th birthday. It is just as relevant today as it was a year ago.

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Excerpts from...

The DD News Blog
Monday, October 3, 2016

My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant. We do not love him less because he lives and survives with profound developmental disabilities.

I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, anda supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers. 
Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.

... the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions: Is it right to make judgments about “ all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs? Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child?

… In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference. Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings.

The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities....

Tuesday, October 3, 2017

Federal Regulations on Least Restrictive Environment and Placement in Special Education

October 3, 2017

The term Least Restrictive Environment (LRE) is often referred to as if there were a hierarchy of special education placements for disabled students. This is usually interpreted to mean that the Least Restrictive setting and the most preferred for all children is the regular classroom with students who are not disabled. In truth, the regulations for the Individuals with Disabilities Education Act (IDEA) clearly leave the determination of LRE up to the people who write the IEP, including the child's parents, and allow for the possibility that settings other than a regular classroom may by the least restrictive based on the needs of an individual student.

The following are IDEA regulations for LRE and Placement of students with disabilities.

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Least Restrictive Environment (LRE) [with emphasis added]

§300.114 LRE requirements.

(a) General. (1) Except as provided in §300.324(d)(2) (regarding children with disabilities in adult prisons), the State must have in effect policies and procedures to ensure that public agencies in the State meet the LRE requirements of this section and §§300.115 through 300.120.

(2) Each public agency must ensure that—

(i) To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are nondisabled; and

(ii) Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.

(b) Additional requirementState funding mechanism—(1) General. (i) A State funding mechanism must not result in placements that violate the requirements of paragraph (a) of this section; and

(ii) A State must not use a funding mechanism by which the State distributes funds on the basis of the type of setting in which a child is served that will result in the failure to provide a child with a disability FAPE according to the unique needs of the child, as described in the child's IEP.

(2) Assurance. If the State does not have policies and procedures to ensure compliance with paragraph (b)(1) of this section, the State must provide the Secretary an assurance that the State will revise the funding mechanism as soon as feasible to ensure that the mechanism does not result in placements that violate that paragraph.

(Approved by the Office of Management and Budget under control number 1820-0030)

(Authority: 20 U.S.C. 1412(a)(5))

§300.115 Continuum of alternative placements.

(a) Each public agency must ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services.

(b) The continuum required in paragraph (a) of this section must—

(1) Include the alternative placements listed in the definition of special education under §300.39 (instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions); and

(2) Make provision for supplementary services (such as resource room or itinerant instruction) to be provided in conjunction with regular class placement.


(Approved by the Office of Management and Budget under control number 1820-0030)

(Authority: 20 U.S.C. 1412(a)(5))

[71 FR 46753, Aug. 14, 2006, as amended at 82 FR 29759, June 30, 2017]

§300.116 Placements.

In determining the educational placement of a child with a disability, including a preschool child with a disability, each public agency must ensure that—

(a) The placement decision—

(1) Is made by a group of persons, including the parents, and other persons knowledgeable about the child, the meaning of the evaluation data, and the placement options; and

(2) Is made in conformity with the LRE provisions of this subpart, including §§300.114 through 300.118;

(b) The child's placement—

(1) Is determined at least annually;

(2) Is based on the child's IEP; and

(3) Is as close as possible to the child's home;

(c) Unless the IEP of a child with a disability requires some other arrangement, the child is educated in the school that he or she would attend if nondisabled;

(d) In selecting the LRE, consideration is given to any potential harmful effect on the child or on the quality of services that he or she needs; and

(e) A child with a disability is not removed from education in age-appropriate regular classrooms solely because of needed modifications in the general education curriculum.

(Approved by the Office of Management and Budget under control number 1820-0030)

(Authority: 20 U.S.C. 1412(a)(5))

Comments to the U.S. Dept. of Education: Part 2 on Transition Services

October 3, 2017

This is a continuation of comments from Caroline Lahrmann to the U.S. Department of Education in response to to Executive Order 13777 that requires federal agencies to evaluate and implement measures to lower regulatory burdens on the American people.

See Part 1 on issues related to special education in disability specific settings. 

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....

Transition Services (34 CFR 300.43) 

Transition services begin at age 14 and continue through age 22 and help the student plan for a productive life once they age out of school.


A January 2017 guide, “A Transitional Guide to Postsecondary Education and Employment for Students with Disabilities,” produced by the Office of Special Education and Rehabilitative Services (OSERS) of the United States Department of Education discusses post-secondary education and training, regular and alternative high school diploma, dual or concurrent enrollment program, early college high school, and employment opportunities such as community-based work, internships, mentorships, and apprenticeships.

There are no sections of this guide which address the needs of children with severe or profound disabilities. One would think that the post-secondary education and training section would address opportunities for young adults with severe and profound disabilities. This section, however, states,

“There are a number of opportunities and programs available for students preparing to exit secondary school. Many of these education and training opportunities involve formal or informal connections between educational, VR, employment, training, social services, and health services agencies. Specifically, high schools, career centers, community colleges, four-year colleges and universities, and State technical colleges are key partners.” OSERS Transition Guide, page 2. (Emphasis added.)

What about supported community employment and sheltered work settings that provide a commensurate wage, and what about facility-based day programs for those with the most profound needs? Why are these opportunities not listed?


The section regarding alternative high school diploma states that this diploma pertains to children with “the most significant cognitive disabilities.” But, the section goes on to say,

“IEPs could include transition services in the form of coursework at a community college or other postsecondary institution, provided that the State recognizes the coursework as secondary school education under State law. Secondary school education does not include education that is beyond grade 12 and must meet State education standards.” OSER Transition Guide, page 3. (Emphasis added.)

Suggesting individuals with the most significant cognitive disabilities, functioning at the level of an infant or small child, could benefit from coursework at a community college is nonsensical. 

Even the sections of the guide that address work opportunities say nothing about supported employment in a community setting, sheltered workshops or facility-based day programs.

Concurrently with the DOE limiting disability-specific programming and not offering appropriate transition services for individuals with severe and profound disabilities, other federal departments, namely the Department of Labor (DOL) and the Department of Health & Humans Services (HHS), are making it harder for young adults with severe and profound needs to access post-secondary opportunities. The DOL is making it more difficult for individuals to receive a commensurate wage by threatening the end of FLSA 14(c) wages certificates and increasing regulation under WIOA. HHS has changed settings rules that make it harder for disability-specific work and day programs to receive HCBS waiver funding. The DOE, the initial place an individual with disabilities receive services in life, should work with other federal agencies to maintain and promote opportunities so that children with severe and profound disabilities that are sent into the world from the education system have appropriate and meaningful opportunities in life.


The preface to the Transition Guide referenced above indicates that OSERS “provides oversight and guidance regarding the administration and provision of transition services by state education agencies (SEAs), local education agencies (LEAs) and state vocational rehabilitation (VR) agencies.” As such, OSERS of the DOE, has a role to play in the provision of appropriate VR supports for children with severe and profound needs. These include commensurate wage opportunities through supported employment and sheltered work as well as facility-based day programs for those who cannot functionally perform work.

Conclusion

While integration is a laudable goal, integration for its own sake is not. In practice, this means that a least restrictive environment for some may be a the most restrictive environment for others. As such, educational and transition programs must look at the individual needs and choices of each child.

It is for this reason that a basic tenet of the Americans with Disabilities Act as set forth by the Department of Justice recognizes the individual as having paramount importance in the administration of public services, 


"..public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do." 28 C.F.R § 35.130

Caroline Lahrmann 
Columbus, Ohio

Comments to the U.S. Department of Education: Part 1 on Special Education

10/3/17

The U.S. Department of Education recently issued a request for comments in response to Executive Order 13777 that requires federal agencies to evaluate and implement measures to lower regulatory burdens on the American people. The request was open-ended and elicited comments on a wide variety of issues regarding federal regulation of education. Many of the responses were related to special education for students with disabilities.

The following comments are from Caroline Lahrmann, the mother of 17-year-old twins with profound intellectual and developmental disabilities (I/DD). Caroline is a resident of Columbus, Ohio.

I have divided these comments into two parts: Part 1 emphasizes issues related to special education in disability specific settings and Part 2 focuses on transition services and programs that serve students on the more severe end of the spectrum of disabilities.

[Over 1600 comments were submitted to the U.S. Department of Education - links to comments can be found here.]

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Introduction

As a parent of 17-year-old twins with profound intellectual and developmental disabilities (I/DD), I have concerns with Department of Education (DOE) regulation which limit opportunities for children with disabilities on the severe and profound end of the disability continuum. Programs that my children now access have been closed to younger entrants and I fear will be gone altogether when those who have been grandfathered in have aged out. Additionally, I see on the horizon a limiting of post-secondary options for children with severe and profound disabilities as disability-specific work and day programs are regulated out of existence, leaving some children with no path to meaningful post-secondary opportunities.

My children are not alone. There are thousands of children across the country who are born with severe and profound I/DD often accompanied by complex medical and behavioral conditions. There needs to be a place for these children in our educational system. The specialized nature of their conditions must not be trivialized and downplayed so as to fit into a neat, one-size-fits-all approach. Life is not that simple, especially for children with severe and profound challenges.

Misrepresentation of U.S. Supreme Court Olmstead Decision

In my children’s short life, I have seen burdensome regulation limit opportunities for children with I/DD. Their specialized school no longer accepts children under the age of 14 for fear of misguided lawsuits brought under the misrepresentation of the U.S. Supreme Court Olmstead decision. Post-secondary opportunities for individuals who cannot perform competitive work, such as sheltered workshops and facility-based day programs, are increasingly under attack by similar litigation.

The Olmstead decision was centered on ensuring appropriate residential accommodations for two adults with mental disabilities. It is now being misrepresented and applied to education and work settings with the goal of eliminating disability specific educational opportunities altogether.

The Olmstead decision did not eliminate disability specific settings that serve many individuals with I/DD in one facility, often referred to as institutional settings. Throughout their decision, the justices on the Olmstead Court emphasized the need for a range of settings for individuals with diverse mental disabilities and they spoke of the importance of institutional settings to protect health and safety for those individuals who cannot handle and benefit from community settings. Olmstead also made individual choice paramount in accessing services. Olmstead stated,

“Unjustified isolation, we hold, is properly regarded as discrimination based on disability. 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.” Olmstead v LC 527 US 581, 597 (Emphasis added.) 


“For the 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, 

(1) the State’s treatment professionals determine that such placement is appropriate; 
(2) the affected persons do not oppose such treatment; and 
(3) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” Olmstead, 607 (Emphasis added.)

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead, 601-602 (Emphasis added.)


Least Restrictive Environment

34 CFR 300.114(a)(2) Each public agency must ensure that - 

(i) To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are non disabled are served in the least restrictive environment (LRE); 
(ii) Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.

This regulation promotes integration for children with disabilities in order to expand opportunities, but when applied with too heavy of a hand, this regulation has removed opportunities for children with disabilities who benefit from specialized programming.

The elimination of disability specific education programs is occurring counter to IDEA. In my research of this issue, Jill Barker of the DD News Blog, provided the following information,

  • IDEA does not rule out congregate or separate schools or classrooms if the child cannot be educated satisfactorily in a regular classroom and if the specialized placement is in accordance with the child’s IEP. In fact, IDEA and its regulations assure the appropriateness of services and placements for all children. 
  • An appropriate education is one that is in accordance with an IEP that has the important protection that it is written with the active participation of the child’s parent(s). When school districts eliminate separate classes or schools, they take away the determination of what is appropriate from the parents and IEP team and leave it up to a general arbitrary policy that may or may not work for the individual child. 
  • The assurance of an appropriate education is being overridden by the misinterpretation of LRE requirements, in much the same way that the misinterpretation of Olmstead is used to restrict services and placement options for people with I/DD.
Please see Exhibit A for a listing of the regulation supporting the assurance of an appropriate education. [This will be posted separately on The DD News Blog. JRB]

Just as gifted children benefit from special classes and curriculum specifically geared to their abilities, children with severe and profound I/DD can benefit from programming designed around their disabilities. In a specialized environment, rather than being told to keep up with non disabled children, children with significant disabilities can thrive.

I question why gifted students are allowed special programming, but students with disabilities are finding their specialized programming under attack.

We also must remember, that there are children whose I/DD is accompanied by complex medical and behavioral conditions that make daily transport to school inappropriate due to health and safety concerns. For these children, application of LRE that stigmatizes the supports that allow for education in disability specific educational settings or at one’s residence (such as their family home or an Intermediate Care Facility for Individuals with Intellectual Disabilities) has harmful consequences and can lead to the lack of availability of appropriate supports for some of our country’s most fragile children.

As a parent of children who attend a school for students with I/DD, I witness first-hand the benefits my children receive in an environment where all teachers and therapists have decades of experience teaching and serving children with I/DD, and where my children can interact with other children with the same challenges. Professionals at their school are passionate about the field of disabilities and have chosen to devote their careers to it. Their passion and their loving and patient personalities directly benefit the children they serve. The collaboration of many teachers and therapists in one setting allows for creative problem solving to address maladaptive behaviors or devise solutions to promote more functionality through adaptive techniques. This collaborative brainstorming happens daily in specialized school settings, settings that cannot be replicated in mainstream public schools.

Additionally, many public schools are not set up to handle conditions connected to children with disabilities such as safe transfers and lifts for quadriplegia, diapering, tube feedings, administration of medication, seizure disorders. Having appropriately trained and experienced nursing supports is essential to children with I/DD and so are teachers and assistants trained and willing to care for such concerns. Specialized schools are more able to have the staff on hand trained in these areas, and thus makes it more possible for children with complex conditions to leave their residences and interact with other children in a school setting.

Increasingly, however, disability-specific school-age programs are becoming van services rather than facility based learning centers. The push for community inclusion at all costs has led to students being forced into the community at all times, visiting the YMCA, the library, museums, etc., rather than spending time at school developing skills and learning. While non-disabled students attend field trips, they are not perpetually shuffled from one community activity to another just to satisfy another’s view of integration.

Finally, the educational experience should be outcome-oriented, meaning the least restrictive environment should be based on the individual and what affords the individual the greatest amount of independence and opportunities. My son can explore his school in his wheelchair and visit other classrooms independently. While my son is able to propel his chair, his intellectual disability does not enable him to understand hazards. As such, his independence in propelling his chair is greatly curtailed in a traditional public school with staircases, other hazards, and people who are not sensitive to his condition. Similarly, my son and daughter have access to therapeutic equipment at their school such as adaptive bicycles, gait trainers, and other equipment that allows them to develop physical and occupational skills. The special design of their school building enables them to use this equipment throughout the building giving them the maximum amount of freedom and opportunity. Such activity would be greatly impeded in a traditional school which is designed for non disabled children and may not have access to a wide variety of equipment and technical expertise. Additionally, my children participate in adaptive music concerts, track meets and swim meets. Such activities and competitions would not be available to them in a traditional public school where school events and teams are geared toward typically developing children. For these reasons, my children’s school is the least restrictive environment for them. The U.S. Supreme Court Olmstead decision recognizes this outcome-based, individual approach to disability accommodation,

Each disabled person is entitled to treatment in the most integrated setting possible for that person recognizing that, on a case-by-case basis, that setting may be in an institution. Olmstead at 605

Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times— perhaps in the short run, perhaps in the long run—for the risks and exposure of the less protective environment of community settings; for these persons, institutional settings are needed and must remain available. Olmstead, 605

For many mentally retarded people, the difference between the capacity to do things for themselves within an institution and total dependence on the institution for all of their needs is as much liberty as they ever will know. Olmstead, 605


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Monday, September 25, 2017

Michigan Conference on Home and Community-Based Waiver Services, 11/14-15/2017

This is from the Michigan Department of Health and Human Services and the Michigan Association of CMH Boards (MACMHB):

Save the Date:



The Annual Home and Community Based Waiver Conference

November 14 and 15, 2017
Kellogg Hotel and Conference Center
55 South Harrison Road, East Lansing 48823

Registration will be open soon.

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) [this is the Waiver program for people with developmental disabilities], 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/MIChild Autism 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. A limited number of scholarships are available to people who receive services and their families. Scholarships may cover registration fees, overnight rooms, travel expenses, meals and child care. Deadline to request scholarship: October 1, 2017. (Form is attached to this message).

Continuing Education Credits for Licensed Social Workers: The Michigan Association of Community Mental Health Boards (MACMHB), provider #1140, is approved as a provider for social work continuing education by the Association of Social Work Boards (ASWB) www.aswb.org, through the Approved Continuing Education (ACE) program. MACMHB maintains responsibility for the program. ASWB Approval Period: 10/10/2016 to 10/10/2019. Social workers should contact their regulatory board to determine course approval. Course Delivery Method: Face to Face Conference. Exact hours are pending.

Overnight Accommodations/Directions: The Kellogg Hotel & Conference Center is located in East Lansing adjacent to Michigan State University. Our special guestroom rate is $80 per night plus tax. For specific directions or to reserve a room, please call 517/432-4000 and mention that you are attending the C-Waiver Conference the discount code is 1711DCH&MA. The deadline for room discounts is October 14.


Conference Brochure and Registration Materials: Conference details and registration will be available on our website, www.macmhb.org - if you have any questions, please call (517) 374-6848.

Anne Wilson, Training and Meeting Planner
Michigan Association of Community Mental Health Boards
426 S. Walnut Street, Lansing, MI 48933
(517) 374-6848 phone
(517) 374-1053 fax
www.macmhb.org
awilson@macmhb.org