Thursday, March 25, 2010

EPSDT and our kids' "best possible functional level"

If you're a parent like me who has been told (by either the schools or Medicaid) that your child doesn't need the best treatment, only enough to get by, then you are going to be very happy about new federal regulatory language.

Federal regulatory law makes it clear that the purpose of EPSDT is to restore out children to their "best possible functional level."

EPSDT stands for Early Periodic Screening Detection and Treatment.   It requires that children on Medicaid under the age of 21 receive all medically necessary screening, preventative, diagnostic, and rehabilitatve services" that are medically necessary.

Section 440.130 of Title 42 defines "preventative services" as "services provided by a physician or other licensed practitioner of the healting arts to...prolong life; and promote physican and mental health and efficiency."

It defines "rehabilitative services" as "any medical or remedial services recommended by a physician or other licensed practitioner of the healing arts...for maximum reduction of physical or mental disability and restoration of a recipient to his best possible functional level."

Wow.  That does not leave states a lot of wiggle room in denying services under EPSDT.

Monday, March 22, 2010

North Carolina disability rights alert: State Issues EPSDT Revision

North Carolina has released a new revision of the state policy towards EPSDT, dated January 10, 2010.

In accordance with recent federal court decisions and federal intervention in six other states, the policy defines EPSDT in the broadest terms.

Please make sure that every parent of a disabled child in North Carolina gets a copy of this.  It opens the door for them to submit requests under EPSDT for home services, skilled nursing, assistive technology and speech replacement devices, other durable medical equipment, ABA and other therapies to supplement or replace those provided by the school, etc.

Sunday, March 21, 2010

DHHS hired UnitedHealth to write Medicaid report to Congress

Why would the federal government hire one of the country's largest private health insurance companies to write a report to Congress analyzing the financial impact of four potential Medicaid regulations?

The report is titled: "Mandated Report to Congress: Analysis of Impacts and Issues Relating to Four Medicaid Regulations".  It was "Prepared for: The United States Congress under contract to: U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Sevices, Contract No.HHSM-500-2005-00024I" (original emphasis).  It is dated September 30, 2009.

The report was prepared by The Lewin Group.  The Lewin Group is a wholly owned subsidiary of Ingenix, which is a wholly owned subsidiary of UnitedHealth Group.  The Washington Post wrote all about it last summer.

UnitedHealth provides Medicaid services under contract to a number of states.  Enrollees in these state contracted services contracts account for about twenty percent of the total enrollee count for UnitedHealth.  This 20% of the membership accounts for fifty percent of the company's income, according to third quarter financial reports.

UnitedHealth announced on Friday they will be breaking ground on a $100 - $150 million data center facility.  It will be just like the one the company built in 2008.  The company appears to expecting significant growth.

Saturday, March 20, 2010

Republicans Voting 'No' On Health Care Reform At Their Own Peril

The Republicans have already shown us what their version of "health care reform" is.

On March 17, Arizona Republican Governor Jan Brewer sent an anti-health reform letter to Speaker Pelosi. Referring to the pending legislation, Brewer wrote "The devastating impacts of the federal legislation will rob Arizonans of their rights and pocketbooks alike."

The next day she became the first US governor to eliminate a state's entire Children's Health Care Program, thereby robbing about 47,000 children of their rights to medical care.

Since Arizona's federal matching funds rate is over 75%, by cutting $385 million from the state Medicaid budget, Brewer is actually losing her state a total of about $1.5 billion in jobs and services.

Last month, the Office for Civil Rights at DHHS opened two official investigations into whether Hawaii, also under a Republican governor, is violating the civil rights of children with disabilities by illegally cutting the services that allow these kids to live at home rather than in institutions.

People need to understand how the alternative to health reform will actually function in the real world. We have the examples already in front of us.
Read the Article at HuffingtonPost

Friday, March 19, 2010

Is Arizona violating the civil rights of children with disabilities?

The New York Times reported yesterday that Arizona has become the first state to eliminate its Children's Health Insurance Program.  The move by Republican Governor Jan Brewer means the state will also be passing up millions of matching federal funds, as for every $1 cut in state spending, the state will lose at least $4 worth of services, jobs, taxes. etc.

The Children's Health Insurance Program in Arizona is operated under Medicaid.  It extends Medicaid benefits, including EPSDT, to 47,000 children.  How many of those children have disabilities is not broken out, but some are bound to be included. 

I cannot even imagine the legal ramifications of deciding a child has a civil right to medical care and then eliminating that right overnight. 

Business Week reported that Arizona was eliminating $385 million from its state Medicaid budget.  Under the Recovery Act, Arizona is receiving seventy-five cents from the federal government for every twenty-five cents it spends of its own money.  Medicaid budget cuts of $385 million would therefore mean a potential loss to the state of $1.54 billion in jobs, supplies, services, and general economic benefit.

Brewer herself made the papers the day before she signed this budget by sending an anti-health reform letter to House Speaker Nancy Pelosi.  Ironically, she complained to Pilosi that "the devastating impacts of the federal legislation will rob Arizonans of their rights and pocketbooks alike."

Then she goes out the next day and tramples on the civil rights of kids with disabilities.

Sunday, March 7, 2010

Three Hawaii families get their Medicaid home health services restored -- at least for now

The Office for Civil Rights at the Department of Health and Human Services (OCR) investigates complaints by individuals or groups that have anything to do with violations of the Olmstead Decision.  The vast majority of Medicaid waiver programs we have now are a result of the "Olmstead Plans" that states were required to design and implement after the June 1999 Supreme Court Decision.

In 2001, the Department of Health and Human Services released a letter to state Medicaid directors explaining how to use EPSDT and their HCBS (Home-and-Community-Based-Services Medicaid waiver groups) programs to meet Olmstead Plan requirements.  The document makes it explicity clear that the purpose of EPSDT is to keep children at home.

This is the basis that I helped four other Hawaii families file complaints with OCR over the past five months.  Four of the families have medically fragile children under the age of 21, the fifth is a young adult quadriplegic. On February 12, OCR opened official investigations of at least two of these.  By now, two families have had services restored that were cut, and a third won her year-long battle for 24/7 skilled nursing for her daughter.

Two of us are left slugging it out, one of which is my own daughter.  I've already filed a separate complaint with OCR against Hawaii and UnitedHealth for violating the ADA's ban on coercion and retaliation.
A second and related issue has come up, which is the fact that children covered by EPSDT cannot be put on waiting lists for any kind of "Medicaid coverable" service.

Right now, there are tens of thousands of children and adults with disabilities on waiting lists for home health services.  Initial information seems to indicate many of these may now be, or in the past have been, eligible for EPSDT services. It certainly can't be right to penalize adults who are too old for EPSDT now because someone violated their civil rights years ago.

I am continuing to work with families.  But the Children's Disability Rights Education Association has put together a petition to OCR and the DOJ asking that they put an immediate halt to this ongoing violation of the civil rights of children and adults with disabilities. 

We need to tell our federal civil rights enforcement agencies that enough is enough.  They need to step in and put a halt to the daily violations of the civil rights of one of our nation's most vulnerable populations.

Please consider signing the petition and helping get the word out.  As the parents, families and caregivers for people with disabilities, including children of all ages we so seldom have the time or opportunity to have our voices heard.  CDREA will ensure that this petition reaches the people it's intended for in our federal government.

About Me

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I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.