Colorado slashes medicaid budget for home based services

According to an article in today's Colorado Springs Gazette, cuts went into effect today stripping home and community based services from about 700 individuals with developmental disabilities.

The change was set into motion by the Centers for Medicaid and Medicare Services, which required that Colorado's reimbursement system be standardized after an audit found discrepancies in how Medicaid dollars were being spent ...The state's developmental disabilities division created a new model that bases benefits on a person's level of disability. The system also places limitations and caps on spending.

It sounds like Colorado may have done something like Hawaii did, moving people with disabilities from one type of medicaid program to another, with a subsequent loss of civil rights.

More Details Emerge in Kentucky Civil Rights Case

A Kentucky blog today contains more details of the federal Office of Civil Rights investigation into medicaid-related civil rights violations. This case has tremendous impact for national advocates for health reform, disability rights and senior long term care issues. The case focuses on whether Kentucky cuts in medicaid provided home support services violate the 1999 Supreme Court Olmstead Decision. The Olmstead decision determined that individuals with disabilities had a civil right to care in their homes and communities and this care was provided through medicaid. Civil cases alleging Olmstead violations for similar state directed medicaid cuts are underway in six other states: Washington, Pennsylvania, Hawaii, Idaho, Tennessee and New Jersey. The Kentucky investigation has set a precedent. Meanwhile, the question arises what are these states doing with the additional American Recover Act funds that they have already received that must be dedicated to medicaid. While the GAO calls for full transparency in the disbursement of funds from ARRA, the requirement for transparency apparently stops at the state level. The states that have announced medicaid home service cuts have already received over $2.5 billion dollars that is required to be spent on Medicaid. Where has it been spent?

New lawsuit filed in Pennsylvania alleging Olmstead violations

Pennsylvania has now become the sixth state I've learned about that has a pending court case based on violations of the civil rights of individuals with disabilities.

CMS proposed new rules to strengthen Section 1915(c) medicaid waiver programs

As part of its celebration of the tenth anniversary of the Olmstead Decision, HHS announced proposed rulemaking designed to strengthen and broaden state operated HCBS 1915(c) waiver programs. The proposed rulemaking was published in the Federal Register last Monday, June 22. Supposedly intended to broaden the potential scope for participants in medicaid waiver programs authorized under Section 1915(c), these rules have one major drawback: they continue to leave implementation up to the individual states. I strongly believe that medicaid (as well as medicare) needs to be operated at the federal level, and that this transfer of power needs to take place as soon as humanly possible.

Feds Investigating Kentucky medicaid home services cuts as civil rights violation

A Kentucky newspaper reported yesterday (June 27) that the US Department for Human Services Office for Civil Rights is investigating Kentucky for federal civil rights violations incurred by cutting home based medicaid services for people with disabilities. Since I started this blog five months ago, I've been able to identify five states being sued for potential Olmstead civil rights violations. I've also found and linked to news articles from eleven more states that are slashing their budgets for home and community support services through Medicaid. Now that the Federal Office for Civil Rights has made this a federal issue, the time has come for the feds to step in and take action at a national level. Sixteen states are all targeting the very weakest group in our society -- children with disabilities. The Olmstead Act gave these children, whether under 21 or as adults, the fundamental civil right to live with their families, by using medicaid to provide the home based services necessary to prevent institutionalization. It's a Federal Supreme Court decision, the laws are federal, and the Office for Civil Rights is federal. And all of these states are presumably receiving significant additional federal matching funds for their medicaid programs through Section 5001 of the American Recovery Act. According to the ARRA website, these 16 states have already received FMAP grants totaling about $2.5 billion dollars. If the federal government deems it a civil rights violation in one state, then it only follows that cutting home based services for children with disabilities is a civil rights violation in the other fourteen states. According to the Office for Civil Rights website, 62% of the 561 Olmstead Act related investigations they performed between April 2000 and May 2009 required "corrective action." I filed a complaint on behalf of my daughter with the DHS Office of Civil Rights last January, but because of the federal suit being brought against the state of Hawaii, I couldn't follow up. I'm refiling today. Maybe if we all filed emails with the Office for Civil Rights, they would take notice how widespread the problem is and put a halt to this unconscionable discrimination against our children with disabilities. Here's where the Office of Civil Rights discusses disability rights. And here's the page with information about how to file a complaint with the Office for Civil Rights. You can do it by email, or filling out their online form. Maybe this is our chance to get this discrimination stopped once and for all.

Two Federal Judges React in Two Completely Opposite Directions Regarding Medicaid Home Services Cuts

In the past six months, federal judges in both Tennessee and Hawaii have had to rule on whether cuts in home and community support services (including PAs, and skilled nursing) pose a violation of the ADA and Section 504. In Tennesee, the judge has granted injunctive relief to the plaintiffs. Here's a summary of the case presented by the National Health Law Project. Here's a summary of the decision by the Hawaii federal judge, stating she lacked subject matter jurisdiction on the matter since the plaintiffs had yet to suffer harm. I'm not a lawyer, but this doesn't make a whole lot of sense to me.

Hawaii Receives $70+ Million in Federal Medicaid Funds While Maintaining Service Cuts

According to the Federal Department of Human Services website, Hawaii received $70,573,033 in Federal Matching Funds (FMAP) for Medicaid prior to March 31, 2009. Hawaii's state medicaid Director, Dr. Ken Fink, has confirmed that Hawaii has been pulling on the funds available through the ARRA's section 5001, which will provide the state with an additional $360 million just for medicaid prior to October 2010. So why is Hawaii refusing to reinstate home and community based service cuts implemented since last July of 2008? Why are parents and caregivers being threatened with having a third round of cuts in the services that enable their children to remain at home and in their communities? Where is Hawaii spending the money? First, I want to clarify that Dr. Fink has stated I am wrong in my earlier posting suggesting Hawaii was violating the Maintenance of Effort (MOE) requirement for receiving the additional federal medicaid funds as stipulated in the American Recovery Act (ARRA) passed earlier this year. Second, I want to clarify that I continue to doubt the extent to which Hawaii's medicaid cuts are allowed under the MOE requirement. Hawaii needs to reinstate all the cuts made to home and community based services and waiver programs as soon as possible, since the deadline for compliance with the MOE is July 1. The latest word by CMS, the government agency responsible for policing and defining states' use of the 5001 federal funding, states clearly that:

several states have made or proposed changes to programs that help seniors and people with disabilities live independently; CMS guidance clarifies that any changes to such waiver programs that would result in fewer people being enrolled would violate the MOE requirement for the increased federal Medicaid funding. As a result of this guidance, states will have to reverse these cuts or rescind these proposals, at least until December 31, 2010

The state of Hawaii has eliminated all of its home and community based waiver services except for the program for the developmentally disabled, and radical service cuts in that program are placing the state in potential violation of the ADA and the rights granted under the Olmstead decision. Interesting, a Performance Report printed by the DDMR division of the Hawaii state department of health in September of 2008, showed FY 2009 expenditures dropping 65% from FY 2008, from more than $20 million annual to only $7.2 million annually. That's a $14 million cut in the services that enable adults and children with special health care needs to remain at home, with their families. On the other hand, the state seems to be requiring an additional $10 million over FY2008 for administrative positions, mostly related to what the state budget keeps referring to as the "proposed Division-wide reorganization." Do we know anything about this reorganization? Why is DDMR disappearing? Who is going to take over providing the financial supports for the home and community care our citizens with special health needs require? The only answer I can come up with is that Hawaii's two new medicaid managed care companies are supposed to be picking up the slack from the waiver programs. The only problem with that solution is that the definition of a "budget neutral program" is completely different for a medicaid program authorized under Section 1115 of the Social Security Act than it is for a medicaid program authorized under Section 1915. And that difference results in a shift in expenses from actual services to employee salaries and insurance corporation profits. Back in 2006, the UCSF National Center for Personal Assistance Services issued a simple explanation of the different budgetary ramifications for 1915(c) waivers as opposed to 1115 programs:

Like 1915(c) programs, 1115 programs must be budget neutral. However, for 1115 programs this means that the program cannot cost Medicaid any more than the state would have spent in the absence of the waiver1, 26 whereas 1915(c) programs should not cost more than providing state plan services, such as nursing home care, to the same population.

In other words, Hawaii's new 1115 Managed Care Medicaid Organizations can't spend any more funds than they would if there were no waiver participants. Excluding from the budget neutrality calculations any funds for an individual, say, with developmental disabilities on a 1915 waiver, is going to reduce precipitiously the budget compared with what would be allowed counting all those previous HCBS waiver participants back into the figures. But all of this was originally calculated before Obama was elected and the ARRA was even being dreamed about. So what is Hawaii spending the money on? It's not on the children and adults with disabilities who desperately need to remain at home with their families and communities. The CMS specifically states that:

To be in compliance with the MOE, a state cannot have done the following after July 1, 2008: ... Eliminated coverage for home- and community-based waiver care that costs more than institutional care, which could make it harder for some individuals to qualify for waiver coverage.

All of the 1915(b) waiver participants who have been switched to an 1115 program can no longer receive all the services they were entitled to previously. Which is why the insurance company giants operating Hawaii's medicaid MCOs are telling parents not to ask for more in home nursing care because if it's cheaper to throw the kid in an institution, that's what they'll do. This would seem to me to be about as blatant a violation of the MOE requirement as you can have.

Is Hawaii violating Federal Requirements for Receiving ARRA Funding?

Hawaii is due to receive an estimated $360 million in additional federal funds for medicaid from the American Recovery and Reinvestment Act (ARRA). The state should have already received over $70 million of those funds. However, the ARRA requires that states must meet a set of requirements in order to receive this funding, intended to protect the civil right of children and adults with disabilities to remain in their homes with their families. Hawaii appears to have violated some of these requirements. On February 1, 2009, Hawaii wiped out four of its five 1915(c) HCBS waiver programs. The chart distributed by the state showed that only the developmental disability (DD) program remained, and only until 2011. On February 1, 2009, Hawaii dumped all its medicaid participants into two managed care organizations: Evercare run by United Healthcare from Minnesota, and Ohana, owned by Wellness of Florida. What that meant in legal terms is that all the previous HCBS waiver participants were switched without their knowledge from a program with the protections of Section 1915(c) of the Social Security Act, to a Section 1115 experimental project (with a 5 year lifespan) run by two for-profit managed care corporations. In so doing they lost federally defined and protected civil rights to medical choice and staying in their homes. On January 20, Hawaii's state medicaid director sent an email to various state legislators stating that:

The DD/MR long term care services are being preserved as a 1915(c) waiver and are not incorporated into the 1115 waiver of QUEST and QExA

On February 1, 2009, this same "robust menu of services which includes Skilled Nursing, Respite and Personal Care services" were cut by anywhere from 15% to 70% for virtually everyone in the DD waiver. This included children within the age bracket covered by EPSDT. (As an aside, what nobody knew was that the two MCOs had been told that any services in place on February 1 could not be changed for 90 days. So if you (a parent or caregiver) had made an informal appeal before February 1, your family member's services could not be cut for at least 90 days. Nobody told us that, though, until after February 1 had come and gone.) Now the state is admitting they are considering another 15% cut in DD service budgets. State DD officials are telling parents to go to their new medicaid MCO to access EPSDT funds for home support services. According, once again, to Hawaii's state medicaid director,

Any EPSDT service required to be medically necessary will continue to be provided.

But a parent was just told by their representative at one of the MCOs that since institutionalization of her medically fragile child would only cost $7,000 a month, the family had better not ask for skilled nursing services that exceeded that. The parent has letters from two of her child's doctors stating 24/7 skilled nursing is medically necessary, and even a prescription for 24/7 nursing from one of them. Meanwhile, the Center for Medicare and Medicaid Services (CMS) in Washington, D.C. issued a follow-up statement in April 2009 clarifying what's called the "Maintenance of Effort (MOE)" requirement states need to meet in order to receive their additional federal medicaid funding under the American Recovery Act (ARRA). According to that statement:

To be in compliance with the MOE, a state cannot have done the following after July 1, 2008: 􀂄 Made it harder for an individual to qualify for nursing home care or home- and community-based waiver services. 􀂄 Eliminated coverage for home- and community-based waiver care that costs more than institutional care, which could make it harder for some individuals to qualify for waiver coverage. 􀂄 Removed individuals currently receiving services through a home- and communitybased waiver program or reduced or eliminated home- and community-based waiver slots that were approved but not filled as of July 1, 2008.

Hawaii has violated all three of those provisions. According to a document published by the Kaiser Foundation in March 2009, Hawaii was expected to receive an estimated total of $360 million in additional Federal medicaid funds between October 1, 2008 and December 31, 2010. According to this same report, Hawaii should already have received at least $70.6 million in these funds from the feds. What's the money being spent on? Why is Hawaii apparently being allowed to flaunt federal regulations? Why are our children being threatened with institutionalization by the representatives of EPSDT? Who's going to put a stop to this? A Primer in the Different Types of Medicaid Waiver Programs A 1915(c) waiver program refers to Section 1915, item (c) of the federal Social Security Act. The definition is:

“medical assistance” ..... payment for part or all of the cost of home or community-based services (other than room and board) approved by the Secretary which are provided pursuant to a written plan of care to individuals with respect to whom there has been a determination that but for the provision of such services the individuals would require the level of care provided in a hospital or a nursing facility or intermediate care facility for the mentally retarded the cost of which could be reimbursed under the State plan. For purposes of this subsection, the term “room and board” shall not include an amount established under a method determined by the State to reflect the portion of costs of rent and food attributable to an unrelated personal caregiver who is residing in the same household with an individual who, but for the assistance of such caregiver, would require admission to a hospital, nursing facility, or intermediate care facility for the mentally retarded.(my emphasis)

Hawaii's state medicaid director stated in his email that

Section 1915 (c) (4)(B) of the Social Security Act does allow for the reduction of the number of hours and days for respite care provided under Section 1915(c) (2) D) if the total cost of care exceeds the cost of care in a Nursing Home. Thus, the DOH does have the authority to reduce respite services if the conditions of Section 1915(c)(2)(D) are affected.

What Section 1915(c) (4) (B) of the Social Security Act actually states is that:

(4) A waiver granted under this subsection may, consistent with paragraph (2)—

(A) limit the individuals provided benefits under such waiver to individuals with respect to whom the State has determined that there is a reasonable expectation that the amount of medical assistance provided with respect to the individual under such waiver will not exceed the amount of such medical assistance provided for such individual if the waiver did not apply, and

(B) provide medical assistance to individuals (to the extent consistent with written plans of care, which are subject to the approval of the State) for case management services, homemaker/home health aide services and personal care services, adult day health services, habilitation services, respite care, and such other services requested by the State as the Secretary may approve and for day treatment or other partial hospitalization services, psychosocial rehabilitation services, and clinic services (whether or not furnished in a facility) for individuals with chronic mental illness. (my emphasis; this paragraph doesn't state what Hawaii's medicaid director said it did)

Except as provided under paragraph (2)(D), the Secretary may not restrict the number of hours or days of respite care in any period which a State may provide under a waiver under this subsection. (my emphasis)

Are "respite care" and the long-term care services required to maintain an individual with special health care needs at home the same thing? They are not, so I don't understand how potential reductions in "respite care" (intended to give the caregiver a break) should have any impact on long-term care supports required by the caregiv-ee. Paragraph (2) (D) referred to above states:

(2) A waiver shall not be granted under this subsection unless the State provides assurances satisfactory to the Secretary that—..... (D) under such waiver the average per capita expenditure estimated by the State in any fiscal year for medical assistance provided with respect to such individuals does not exceed 100 percent of the average per capita expenditure that the State reasonably estimates would have been made in that fiscal year for expenditures under the State plan for such individuals if the waiver had not been granted.

However, in 1999 (after the 1991 writing of the above paragraphs in the Social Security Act), the Supreme Court released what has become known as the Olmstead Decision.

In Olmstead v. L.C. and E.W., 119 S.Ct. 2176 (1999) the Supreme Court stated loud and clear that the denial of community placements to individuals with disabilities is precisely the kind of segregation that Congress sought to eliminate in passing the Americans with Disabilities Act (ADA).

According to the Supreme Court, the rights to community support services extends to individuals already living in the community but at risk of institutionalization because of a lack of appropriate community supports:

Since the Makin [a district court case in Hawaii] decision numerous courts, including the 10^thFisher v Oklahoma, have confirmed that individuals “at risk of institutionalization” can successfully pursue an Olmstead lawsuit. In addition the U.S. Department of Health and Human Services, Office of Civil Rights (the federal agency responsible for ensuring that states comply with the Supreme Court decision in Olmstead) has confirmed that the mandate of Olmstead applies to people living in the community, but at risk of institutionalization because of a lack of appropriate community supports. (See HHS, Olmstead Circuit Court of appeals in Update #2, letter to state Medicaid Directors, July 26, 2001).

That review of the Olmstead Decision goes on to note that:

Olmstead is not a case based on the federal Medicaid law. The Supreme Court decision did not directly change Medicaid law. What the Court did do is make it clear that the state must operate its programs in a manner that complies with the ADA integration mandate. Of all state programs, the Medicaid program is the one most likely to be impacted by the Olmstead decision, because it is a major source of state financing for long-term care for people with disabilities. Furthermore, the Medicaid program is structured so that it is much easier to obtain long-term care in an institution than to receive similar supports in the community. This structure creates an inherent tension as far as operating the Medicaid program so that it complies with Olmstead.

"Inherent tension" is putting it mildly.

A second type of medicaid waivers are those authorized under Section 1115 of the Social Security Act.

These are managed care medicaid programs. There are several descriptions online of the differences between Section 1915(c) and Section 1115 waivers, but the following is very to the point:

these Waivers are research and demonstration Waivers......When states accept the 1115 Waivers, there must be an evaluation process to ensure that those whom the original Medicaid law intended to include receive benefits and services

The budgeting distinction between the two types of waivers has enormous impact on the provision of the long term care services provided to Medicaid participants:

Like 1915(c) programs, 1115 programs must be budget neutral. However, for 1115 programs this means that the program cannot cost Medicaid any more than the state would have spent in the absence of the waiver¹,²⁶ whereas 1915(c) programs should not cost more than providing state plan services, such as nursing home care, to the same population.

An enormous source of tension with Section 1115 "demonstration projects" is that they allow profit-making companies to administer EPSDT. The National Health Law Project has published a list of 30 questions that all should be answered "yes" in evaluating whether a managed care project is meeting EPSDT requirements.

National Health Law Program wants to know if your child's services have been cut since July 2008

In late March of 2009, the National Health Law Program published their analysis of certain aspects of the American Recovery and Reinvestment Act with relation to medicaid. They make the following statement:

If your state is considering implementing a Medicaid policy that is more restrictive than its July 1, 2008 rules, please contact us. In particular, we understand that members of Congress are monitoring the extent to which states are proposing service cutbacks. Please contact us if service cutbacks are being proposed or implemented. We are also interested in hearing from advocates in states that may obtain enhanced FMAP but use it for non-Medicaid purposes, i.e. on highways or other infrastructure projects.

In other words, if any of your child's services received through medicaid (and I would ask if that shouldn't include EPSDT services provided by your school) have been reduced since July of 2008, then your state isn't eligible for that nice chunk of federal money coming it's way. It's what NHelp refers to as the "maintenance of effort requirement" of ARRA. Individual states will lose their new federal funding if the federal government discovers they've cut disability services (and particularly waiver services) after July of 2008. The states obviously don't want that to happen, but as my roster of the "hall of shame" has grown to 15 states, it appears not a lot of attention is being paid to this requirement. Please, please let NHelp know if there have service cuts in your state (or county) since July 2008 that haven't been reinstated. It's so important for our kids and their futures. NHelp's contact information is:

NOTE: Please be advised that NHeLP cannot provide legal advice to individuals. We are not a direct service agency. The following websites may assist you in locating legal resources in your community:

• LSC Directory-legal help in civil (not criminal) matters for low-income people.
• Protection & Advocacy System--provides protection of the rights of persons with disabilities through legally based advocacy
• The American Bar Association website provides useful links to lawyer referral services and pro bono legal help for the poor.

Los Angeles Office (Main Office)

2639 South La Cienega Blvd Los Angeles, CA 90034-2675 ph: (310) 204-6010 fx: (310) 204-0891 nhelp@healthlaw.org

Washington, DC Office

1444 I Street NW, Suite 1105 Washington, DC 20005 ph: (202) 289-7661 fx: (202) 289-7724 nhelpdc@healthlaw.org

North Carolina Office

211 North Columbia Street, 2nd Floor Chapel Hill, NC 27514-3503 ph: (919) 968-6308 fx: (919) 968-8855 nhelp@healthlaw.org

Health Consumer Alliance hca@healthlaw.org

10 states cut funding for kids with disabilities with $200 million on the way from the Feds

According to a story published by the AP on MSNBC on June 4, about $200 million in federal stimulus funds are on the way to the states, mostly for social programs. If this is the case, why is it that states are rushing to cut the services these social programs offer? What's particularly offensive is the fact that many of these state cuts are targeting children (including adult children) with disabilities, aimed at tearing away the support networks that allow these children to remain at home with their families. In the past few months, at least fourteen states have announced cuts in medicaid services. Many states specifically mention targeting the professional services that help these children stay home with their families, rather than being institutionalized. This is particularly ironic, since study after study has shown the substantial cost savings to the states from de-institutionalizing and allowing the aged and people with disabilities to stay in their homes. Class action suits are going on in four states that I know of; in a lot of instances we don't hear of these cases because gag orders are issued against the plaintiffs. It's supposedly to protect the privacy of the plaintiffs, but it also keeps the larger disability community (not to mention the media and our legislators) unaware of what's going on. If a state school system announced it was it was eliminating all classes attended by Hispanic children, and it was now up to their parents to try and figure out how to educate them, there would be a national outcry. Several national groups are trying to circulate petitions and encourage folks to contact their congressional delegations, to show support for the types of medicaid reforms that we need in order to ensure our children receive their civil rights. Please, take the time to sign the petitions and call your congressional leaders. I know what life with a disabled child is like, the heartache, the roller coaster, the exhaustion, the frustration, the feeling you're going to scream if one more state employee tells you they're cutting your child's services. But we've got to stand up and speak for our kids. That's the only way they can be heard. Here are some of the places where you can take action: The American Association of Persons with Disabilities has a petition supporting many of the issues that are plaguing the parents of children with disabilities. (This petition is actually being distributed by a number of separate groups). The ARC's Federal Legislative Action Center United Cerebral Palsy is asking for help supporting legislation to boost the number of direct service care providers, ensuring our children have the professionals they need available. The National Organization to End the Waitlists has a petition to sign to eliminate the waiting lists that prevent thousands of individuals with disabilities from receiving the in-home support services they are entitled to under federal law. Please let your friends, and the other mailing lists you're on, know about the issues, and the options we have to speak up. We have to get Washington's attention before it's too late.

Hawaii Accused of Violating EPSDT and the ADA

In early May of 2009, the federal judge in Hawaii who had been considering a class action suit accusing the state of violating the ADA and Section 504, handed down a decision. As a Federal judge, she stated she lacked "subject matter jurisdiction." I'm just a mom, but federal law ----- federal judge ---- I don't see the problem. With my daughter and I therefore released from the suit, I feel it's important for the disability community, and more importantly, the politicians all the way up to President Obama himself, to see and understand the abominable things the states are getting away with in relation to violating the rights of people with disabilities. I've uploaded the documents in three groups: the letters sent by state to the parents and guardians of children with disabilities; the complaint filed accusing the state of violating EPSDT and the ADA and Section 504; and the third is the filing by the federal court judge claiming she doesn't have subject matter jurisdiction. Here's the story in short: In July of 2008. the Developmental Disabilities Division of our state Department of Health announced that they were reviewing the service hours for any child age 13 or less receiving more than 29 hours of services a week. We were given extensive surveys to fill out. I sent mine in accompanied by a letter from my daughter's doctor stating that her current level of service (24/7 skilled nursing) was medically necessary. As a result, we made it through that set of cuts, although a lot of kids didn't. In late December, 2008, the DD Division announced they were doing a straight 15% cut of the home services offered to adults and children in Hawaii's Home and Community Based Services (defined in federal law by Section 1915(c) of the Social Security Act). The parents and guardians were given a chart so they could choose where their child's services were being cut. Some families noticed that they had been cut already in July, so now they were being asked to sign a form agreeing, in essence, to a 70% cut in services. The cuts were go to into effect on February 1, which coincidentally was also the day our state medicaid service became an HMO-based service. Lawyers and state legislators got involved at that point in time. The state legislature, it turned out, hadn't been told by the DD Division that this was actually a second set of cuts. They had been told that nobody would be endangered by the cuts. State legislation was introduced (and ultimately defeated) that would have used the state's emergency fund to put back the services that had been cut. After the lawyers were involved, the state came up with a complicated appeal process. There were to be informal appeals, and then if you didn't like the result of that, formal appeals. If you read the fine print at the bottom of the form announcing the appeal process, you'll see the state announced that if you lost the informal appeal, and lost the formal appeal with services continuing that entire time, you would have to pay the state back for all those undeserved service hours. Talk about terrifying people into not appealing. The federal decision that came down in May, 2009, threw two of the families out on the basis that they had yet to be damaged by the cuts. The issue that the state government had stated in writing, twice, that they were identifying groups defined by their disabilities and targeting those defined groups with service cuts -- something that clearly violates the Americans with Disabilities Act -- was ignored. My daughter and I are one of those two families. We had our informal appeal in mid-March and have yet to receiving any decision. The federal court was denying subject matter jurisdiction on the basis the service cuts hadn't happened yet, while the state was delaying getting out the results of the informal reviews until the federal court handed down its decision. At least, this is how it has all seemed to me. I don't understand how the Federal government can so blithely allow the states to violate the civil rights of children. Just because they're children with disabilities makes no difference. Can you imagine the uproar if a state announced that they were cutting the book budget just for students of hispanic origin? Or they were cutting the lunch budgets for all girl students? The situations are the same, but in the case of our families, we're all just too exhausted, sad, frustrated and sick to do the kind of yelling that we need to do in order to get the people in charge of health reform to hear us. I plan on emailing the link to the federal court decision to all our state and federal legislators. Can you help get the word out about how our kids are being hurt?