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?

Disability Rights Action Alert for National Health Care Reform activities

Two national disability groups have released petitions on the internet. Each petition addresses a different aspect of national health care reform, and both petitions affect the medical civil rights of our children. Please help spread the word of both petitions to all the groups that you participate in. The petition sign up sheets can be submitted over the internet, or you can print them and take them to your local meetings. These both have tremendous implications for our children's futures, and we need to get involved and let our voices be heard. The National Organization to End the Waitlists is focusing their efforts on the waiting lists for entry into the Medicaid waiver programs that plague so many states, and prevent hundreds of thousands of our kids from receiving the medical rights they're entitled to. If you're not familiar with the Medicaid waiver programs, qualification is based on the income and assets of the individual with the disability, and don't take into account any assets or income of the family. A primary focus of the waiver programs is to provide the appropriate in-house medical supports that will enable our kids to stay at home while receiving the appropriate professional medical supports. Once our kids get into these programs, they are pretty much there for life, which for me, at least, provides a sense of relief about my daughter's future. Nowait is also pushing that once an individual is finally placed in a medicaid waiver program, their medical rights don't follow them if these move to another state, and sometimes, just another country. Their petition is here: http://www.gopetition.com/petitions/noewait.html The Center for Self Determination's goals are much broader: reform Medicaid to ensure that home professional supports are available for those who need them. They're speaking for the wider community of individuals with special health care needs, which includes the elderly, people sufferering from chronic health problems, as well as our kids. I've uploaded to Scrib the Executive Summary of their goals. Signatories already include all the major disability and senior citizen rights groups. The more in-depth reports upon which this summary is built are all linked to here. Their petition is here.

Disability Rights Action Alert for May 13 National Call Day

Disability rights groups have called a National Call-In Day for tomorrow, May 13. It's in support of the Senate Finance Committee's report on health care reform, released only yesterday. This report offers major support for our children with disabilities. It expands the medicaid waiver programs, designed to provide the supports needed to keep our kids home with their families, eliminates the waiver program waiting lists that plague many states, eases the medical requirements for entry into the medicaid waiver programs, and increases the FMAP (Federal matching funds) by 1%. There are other benefits for our kids, but these are the ones that, as a parent, give me the most hope for my daughter's future. The May 13 National Call-In to the Senate has been announced by the Consortium for Citizens with Disabilities. Disability rights groups around the country are spreading the news. The CCD has even provided an example script for call-ins, but if we are going to call as the parents of children with disabilities (and I think we need our voices heard), the script needs to be altered a bit. Here is the entire report that was released yesterday. The section on long-term care and the Medicaid HCBS (Home and Community Based Supports) waiver programs begins on page 49. Please participate in tomorrow's call-in. It could have a tremendous impact on our children's future. The procedure for tomorrow is:

When: Wednesday, May 13 (Between 8AM and 6PM EDT) Call-In Number: 1-866-459-9232 (Toll Free) You will be asked which state you are calling from and will be connected to your Senators’ offices.

Here is the sample script being distributed via the CCD:

Hello (state your name and where you are calling from). I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.

You might want to think about this as an alternative, to reflect our role in the discussions:

Hello my names is {...} and I'm calling from {city} in {state}. I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. I'm the {mother,father,grandmother,etc} of a child with disabilities, and these long-term services and supports are essential to {his/her} civil right to remain with {his/her} family. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.

Here is the list of US senators, and you can sort it by state. Remember, it's best if you call rather than emailing or using their form online. Priority in the senate offices is always given to telephone calls, and you can use the toll free number I listed above to then get transfered to your senator's office.