CDREA publishes new CMS definitions of case management for kids with disabilities

The Children's Disability Rights Education Association (CDREA) has published an article on the latest definition of case management services issued by the federal Medicaid regulatory agency.

The broad scope of required activities that must be included in "case management", coupled with the role that the individual or their designated health care decision maker play in determining these activities, gives families more control over the services they need than ever before.

While the document in question related specifically to children covered by EPSDT (i.e., under the age of 21 and receiving Medicaid), similarly written documents have been issued that cover individuals of any age who receive Medicaid because of their enrollment in what's called a "Medicaid waiver" program. 

In the state of Hawaii, for instance, anyone currently enrolled in the state's QExA program, and therefore receiving their Medicaid services through either Evercare or Ohana, plus anyone currently enrolled in the states Developmentally Disabled waiver program, are entitled to case management services.

Hawaii's "sacrifice" of its children becomes a national scandal that extends to the state's elderly and disabled

Hawaii's Governor Lingle's solution to balancing the state budget by cutting the school year by 17 Fridays has now attained the level of a national scandal. An editorial in today's New York Times notes that "Hawaii has sacrificed its own schoolchildren" who are now "learning a terrible lesson in how little their government and teachers think an education is worth." A week ago, US Secretary of Education Arne Duncan wrote in an opinion piece published in the Honolulu Advertiser that Lingle's "furlough Friday" plan was "inconceivable" and went on to note that Hawaii had already received $105 million in stimulus funds for education, and is scheduled to receive a total of more than $500 million for education. Today's NYT editorial notes that Hawaii "instead used the $105 million to cut its own contribution to education, which was legal but hardly admirable." I've been asking since June what Hawaii is doing with it's additional stimulus millions received for Medicaid. As of October 23, Hawaii has received $154 million that can't be spent on anything except Medicaid. The federal requirements for receiving Medicaid funds stipulated the money couldn't be put into any reserve or rainy day account. Hawaii's state medicaid director admitted the state used part of the money to pay back bills and put the rest into the general fund, but that was about $80 million ago. Every parent, caregiver and service provider in Hawaii that has any contact at all with the state's 'aged, blind and disabled' population can tell you that while these millions of tax-payer gift funds flowed into the state's bank accounts, Hawaii has been cutting Medicaid services by as much as 88%. These budget cuts are specifically targeted at the home and community-based services that enable our elderly, as well as adults and children with special health care needs, to remain at home with their loved ones. The cuts are being implemented by the two for-profit insurance companies that took over care of Hawaii's "aged, blind and disabled" population on February 1. We have the evidence to show that those two for-profit insurance companies are cutting services by means of constantly altering the scoring tools they use to qualify people for home services. A federal judge just stopped California from implementing Medicaid home services cuts because the scoring tools were being abused to the point of violating the Americans with Disabilities Act and civil rights granted under the Olmstead Decision. Meanwhile, we've just realized that Hawaii's Department of Education may be in violation of federal Medicaid law as well. The reverse opt-out letter the department sent to parents in December 2008 does not appear to meet federal requirements for Medicaid billing. I asked my daughter's school system for an itemized accounting of what they had billed Medicaid on her behalf over the past year on Monday, October 19. I asked to receive it by Friday, October 23. As of today, I still don't have it. What's the hang-up? If records were being maintained the way federal Medicaid law requires, then it should have been a relatively simple matter of sort and print. In February of this year, the Hawaii state auditor's office "revealed an organizational culture of disregard for ...procurement laws and rules" in the DOE's procurement office. The report noted "that culture has allowed office directors, managers, and staff to believe they have the discretion to unilaterally determine whether compliance ... is in the best interest of the department." As the parent of a child with disabilities, my experience has shown that same culture of disregard for the law extends to most of the contacts I've had with employees of the Department of Education, Department of Health and Department of Human Services. I filed complaints against Hawaii with the DHHS Office for Civil Rights and the federal agency that regulates state Medicaid programs and spending (CMS) in July and August. I know that CMS has had extensive conversations with state employees, but illegal service cuts affecting children with disabilities were happening as recently as yesterday. Hawaii isn't just sacrificing it's schoolchildren, it's condemning its entire population of children and adults with special health care needs. Children's lives are, literally, being balanced against company profits while state and federal officials turn a blind eye. If federal officials like the Secretary of Education can't get the state to behave legally, who will? If the federal office that regulates Medicaid can't get the state to behave legally, who will? When regulation fails, how long before enforcement steps in? Do we really have to wait for a child to die?

Medicaid, IEPs and the right to case management services

What is Case Management Here's how the federal regulators of Medicaid recently (June 30, 2009) described case management services for an individual with disabilities:

we recognize the advantages of a team approach to case management services. For example, a lead case manager could coordinate resources and expertise from providers of medical, education, social, or other services for the benefit of the individual in developing a comprehensive plan of care and facilitating access to services. To facilitate this service model, States may set differential rates to reflect case or task complexity that would ensure sufficient payment to reflect the costs that case managers may incur in consulting with other practitioners.

For the parents and caregivers of people with special health care needs, dealing with all the different local, state and federal bureaucrats can be "the death of a thousand cuts." This definition entitles the people we're caring for to an individual (or maybe two) whose job it is to coordinate with all the different government departments -- Medicaid, EPSDT, Department of Education, Department of Health, Department of Human Services, Vocational Rehab -- plus the individual's doctors, therapists and service providers. Who is entitled to case management under Medicaid? Case management is a federally required minimum service to be offered by every state's Medicaid program for children under the age of 21 (EPSDT) (42 U.S.C. 1397jj). Case management is also required for adults and children with special health care needs who are participants in a Medicaid waiver program authorized under Section 1915(b) or 1915(c) of the Social Security Act (see 1915(c)(4)(B) and 1915(b)(1). In Hawaii, this would cover everyone who is still enrolled in the state's DDMR waiver program. And at least in the state of Hawaii, case management is a requirement for all 37,000 aged, blind and disabled individuals who are participants in the state's new Section 1115 QExA managed care program (see Chaper VI, section 28(c)(ii) of the document authorizing the creation of the QExA program). How to obtain case management services A 2004 government pamphlet aimed at explaining to parents how to use EPSDT includes instructions on how to obtain medically necessary items and services directly from your Medicaid provider. The process of obtaining individualized case management services should be as simple as giving your Medicaid provider a letter of medical necessity written by a physician or other appropriate medical or educational professional, and a doctor's prescription for the services. If you live in a state that adheres to federal Medicaid law, that should be it. If you live in a state that does not adhere to federal Medicaid law, or worse, has for-profit insurance companies interpreting federal laws, the process can be full of stress, frustration and never-ending delays. Case Management and your child's IEP Federal law requires "Medicaid to be primary to the Department of Education for payment of the health-related services provided under IDEA." More recently, the federal office that regulates Medicaid published the following in the Federal Register on June 30 2009:

Medicaid reimbursement remains available for targeted case management services and other covered services, which are included in an eligible child’s Individualized Education Program (IEP) or Individualized Family Service Plan, consistent with section 1903(c) of the [Social Security] Act.

A handbook published by CMS in May 2003, and re-ratified by the June 30 ruling, includes a list of services that are the responsibility of the case manager of a child under the age of 21. Some of these include:

1. Making referrals for and/or coordinating medical or physical examinations and necessary medical/dental/mental health evaluations.
2. Making referrals for and/or scheduling EPSDT screens, interperiodic screens, and appropriate immunization, but NOT to include the state-mandated health services.
3. Referring students for necessary medical health, mental health, or substance abuse services covered by Medicaid.
4. Arranging for any Medicaid covered medical/dental/mental health diagnostic or treatment services that may be required as the result of a specifically identified medical/dental/mental health condition.
5. Gathering any information that may be required in advance of medical/dental/mental health referrals.
6. Participating in a meeting/discussion to coordinate or review a student’s needs for health-related services covered by Medicaid.
7. Providing follow-up contact to ensure that a child has received the prescribed medical/dental/mental health services covered by Medicaid.
8. Coordinating the delivery of community based medical/dental/mental health services for a child with special/severe health care needs.
9. Coordinating the completion of the prescribed services, termination of services, and the referral of the child to other Medicaid service providers as may be required to provide continuity of care.

A parent or caregiver can apply to their Medicaid provider directly for a case manager, and expect all these services to be provided for their child. These services could also be provided by the school, which will then bill Medicaid for the services, and for the administrative time spent arranging for them. In 1979, Jimmy Carter formed the first federal Department of Education. In the 14 months between then and the change of Administration in January 1981, the DOE published a blueprint for how schools and Medicaid should work together for the benefit of the student.

Coordination of all services -- outreach activities, screening programs, treatment, and follow-up services -- should be emphasized between school health and other health care providers, and social agencies in the community, to avoid duplicating efforts, increasing costs of services and adding further stress to the child and family. A means by which one care plan, if at all possible, can be used as a principle vehicle for monitoring the provision of services is a priority area for action... Schools should develop a plan ...[to] determine the extent to which health services are being provided, and the degree to which coordination of services between EPSDT and other programs is taking place.

For any child on Medicaid, the IEP should be a single document that incorporates all the services a child receives, whether from DOE, Medicaid, a Medicaid managed care company, or private organizations. And that IEP needs to include the case manager who will coordinate all the services being received. Who can NOT be the case manager? Federal law [42 CFR section 441.18(a)(6)] prohibits "providers of case management services from exercising the agency’s authority to authorize or deny the provision of other services under the plan." This means that the people at Medicaid who authorize and deny Medicaid services cannot also provide case management services. In Hawaii, for instance, UnitedHealth Group and WellCare Health Plans, which authorize and deny services for their Medicaid participants, cannot also provide the case management services for these participants. It would be a conflict of interest.

CDREA calls for Hawaii state audit of DOE spending of Medicaid funds

Children's Disability Rights Education Association President Summer Harrison and Vice President Linda Nuland-Ames on Thursday called for a full state audit of Medicaid spending by the Hawaii Department of Education. Harrison and Nuland-Ames were at the annual Kauai DD Committee Legislative Forum, presenting the results of their past several months of research into Hawaii's Medicaid programs. The subject of the DOE furlough Fridays, the first of which was due to happen the next day, came up. Harrison pointed out that DOE services that were paid for by Medicaid could still take place on Fridays. Harrison had established that her daughter's paraprofessional service through Nursefinders was likely a Medicaid financed service since it was to continue on the furlough Fridays. Nuland-Ames asked how many parents at the meeting knew that DOE could bill Medicaid directly on behalf of their children. No one was. A few years ago, Medicaid told inquisitive parents that it wasn't any of their business, Nuland-Ames noted. Within the past week, Harrison had contacted her daughter's school to demand an accounting of all services and items billed to Medicaid by DOE on Hannah's behalf. She asked for the accounting by Friday, October 23. Her district office emailed to say she would be hearing from someone, but as of the writing of this post, still hasn't responded. Some but not all parents remembered the letter they had received from DOE in December 2008 stating that failure to return the letter would be permission for DOE to bill Medicaid on their children's behalf. According to research done by CDREA and published on their website, it would appear that the Hawaii DOE letter meets none of the federal requirements for parental notification of and permission for DOE billing of Medicaid on their child's behalf. Harrison reminded the state legislators in attendance of the Hawaii auditor's report on DOE's procurement office, published in February 2009. The auditor's office

revealed an organizational culture of disregard for procurement rules in the Office of School Facilities and Support Services (formerly known as the Office of Business Services and referred to herein as the “Office of School Facilities”). That culture has allowed office directors, managers, and staff to believe they have the discretion to unilaterally determine whether compliance with procurement laws and rules is in the best interest of the department.

She pointed out that while she didn't know if any Medicaid billing went through the procurement office, or if that was done someplace else in DOE, the fact that the schools couldn't give a parent an accounting within five days raised concerns. Given the current economy, the public furor over furlough Fridays which are intended to help the governor balance the state budget, and the issues raised about Hawaii's two for-profit Medicaid companies, CDREA's request for a state audit of DOE use of Medicaid funding was met favorably.

Please, if you're the parent of a kid with special needs, read this

For the first time in my history as the mom of a kid with disabilities, we parents have the ability to get our kids all the home and school support services, technology and therapies that their doctors think are medically necessary. We can go straight to the source, rather than wait around for our local Department of Education or Voc Rehab to get their paperwork together. All you need is a prescription, the evaluation and a letter of necessity, and you turn it over to your Medicaid case worker. Better yet, some of the corporations such as Dynavox, handle all the paperwork for you. The timing is perfect. The government has dumped over $28 billion into state coffers that can only be spent on Medicaid, with more on the way. Schools have been given more money as well, with a particular emphasis being given to using it on assistive and augmentative technology. The percentage of a state's total Medicaid budget which will actually come out of state accounts is somewhere between 10-35%. I did a rough calculation, and for a state paying the highest percentage, for every $10 million of its own money the state does NOT spend, the state loses about $28 million in immediate jobs and services. The only problem is, in too many states, nobody knows what happens to those stimulus bucks once they disappear into some new, very deep coffers. If your state is continuing to cut medicaid services for your child, if your school is trying to cut service hours from the IEP, then there's a good chance there are some questions about how your stimulus tax dollars are being spent (and even if they are at all). Last week, the Government Accounting Office issued a report focusing on how states are using their stimulus funds. The report called into question the "quality and reliability" of data that the states are giving the feds about how and on what they're spending their stimulus bucks. Meanwhile, Department of Health and Human Services Kathleen Sebelius released an additional $600 in stimulus funds to the states just between September 17 and 30, 2009. Nobody in the media, nobody in the government, is paying attention to the mystery of how states are spending their stimulus dollars. CMS refers all calls on the subject to its Baltimore headquarters. Three states are under some sort of federal investigation for violating federal Medicaid law and the Americans with Disabilities Act, and 7 more have civil suits filed or in preparation alleging similar violations. A friend of mine with disability law experience and I have put together a group called Children's Disability Rights Education Association. Our role is to help parents and caregivers take greater control over their child's health and education. As CDREA we have a petition up, calling on DHHS to require complete accountability from the states, and to ensure priority is given to restoring Medicaid service budget cuts made since July 1, 2008. These cuts have unfairly targeted children as well as adults with disabilities who need skilled care to live at home with their families. Similar problems are plaguing state stimulus funding received for education. I just found this source, but the correlation between what's happening with money for both special education and medicaid home support systems is an atrocious example of discrimination against children, as well as adults, with disabilities. Please consider signing our petition, and forwarding it to your friends.

We're Site of the Day on About.com's Special Needs Children forum

Please read and consider signing our petition - states are continuing to make cuts in services that have a serious impact on the quality of life of our elderly and our people with disabilities while billions of stimulus funds sit in their bank accounts. Thank you Terri for your help!

New documents on Scribd regarding EPSDT and recent CMS rulings

I've just posted quite a few new documents to Scribd. The good news (and I'll write more about it later) is that CMS has now endorsed the following statement it made in May of 2003:

The Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) provision is Medicaid’s comprehensive and preventive child health program for individuals under the age of 21. ESPDT services include periodic health screening, vision, dental, and hearing services. The Medicaid statute also requires that states provide any medically necessary health care services listed in section 1905(a) of the Social Security Act (the Act) to an EPSDT recipient even if the services are not available under the state’s Medicaid plan to the rest of the Medicaid population.

The Individuals with Disabilities Education Act (IDEA) was passed to “assure that all children with disabilities have available to them… a free appropriate public education which emphasizes special education and related services designed to meet their individual needs.” The IDEA authorizes federal funding to states for medical services provided to children through a child’s Individualized Education Program (IEP), including children that are covered under Medicaid. In 1988, section 1903(c) of the Act was amended to permit Medicaid payment for medical services provided to Medicaid eligible children under IDEA and included in the child’s IEP.

While schools are legally liable to provide IDEA-related health services at no cost to eligible students, Medicaid reimbursement is available for these services because section 1903(c) of the Act requires Medicaid to be primary to the U.S. Department of Education for payment of the health-related services provided under IDEA. Medicaid covers services included in an IEP under the following conditions: • The services are medically necessary and included in a Medicaid covered category (speech therapy, physical therapy, etc.); • All other federal and state Medicaid regulations are followed, including those for provider qualifications, comparability of services and the amount, duration and scope provisions; • The services are included in the state’s plan or available under EPSDT; and • The medical service must be provided to a Medicaid eligible student.

Put this together with the 1980 DOE pamphlet on EPSDT and the schools, and new horizons for getting our kids the help they need have opened.

Shirley Hufstedler and EPSDT

If you're not familiar with her name, Shirley Hufstedler was the very first US Secretary of the Department of Education. Jimmy Carter appointed her, and according to Wikopedia, said that if he'd had an appointment to make to the Supreme Court, it would have Hufstedler. During the fourteen months that she served as the Secretary for Education, a brochure on EPSDT was jointly published by Hufstedler's DOE and the Health Care Financing and Public Health Administrations of the Department of Health and Human Services. The 1980 brochure (the date is handwritten on the cover of what I found on the internet) is titled "EPSDT - A How-To Guide for Educational Programs." As a parent who has spent the past seven years advocating separately for my daughter's rights under IDEA and EPSDT, this is strange news. On page 17, it clearly states that there should be only a single care plan for each child, so that services received under EPSDT are clearly delineated in the IEP. It's a fascinating document on how all the civil rights of our kids with disabilities were supposed to be cared for by an integrated system working towards individualized goals and accomplishments for each child. A second document, targeted specifically for parents, was published by DHHS in September, 2004. It says the same thing about joint EPSDT/IEP care plans. If any parent reading this has such a thing, would you please let me know? In other words, home care, nursing care, additional speech, physical or occupational therapies (in addition to those paid for by DOE), assistive technology, all marked as paid by EPSDT, are in your child's IEP?