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.

When parents are caregivers

I've had a really hard time finding statistics on how many children with disabilities are living at home being cared for my their parents. At the time the Developmental Disabilities Assistance and Bill of Rights Act was passed in October of 2000, the federal government found that 88% of individuals with developmental disabilities lived with their family or in their own homes. Since the government figures showed a national population of individuals with developmental disabilities somewhere between 3.2 and 4.3 million, that 88% equals at least 2.8 million adults and children with developmental disabilities. The feds identified at least 479,462 adults with developmental disabilities who were living with parents aged sixty or older. More recently, according to the Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website, at that point in time there were 10,221,439 children between 0 and 17 with special health care needs. Of these, 94.8 percent live with their parents. Since the statistics for 2005 are broken down by the size of the family, those 9,689,924 children were cared for by 15,678,331 parents. In total, we're talking a population of the United States equal to over 25 million citizens represented by children with special health care needs and the parents who are taking care of them. For some reason that I have yet to understand, this enormous minority population isn't included when people start talking about "caregivers." I've found three membership groups online for caregivers -- the National Family Caregivers Association, the Family Caregiver Alliance, and the National Alliance for Caregiving -- NONE of which even seems to recognize the existence and needs of these 25 million citizens. And by not recognizing the needs, they are also not educating families about the solutions, EPSDT in particular. I kind of understand it. If someone called me on the phone for a survey and asked me if I was a caregiver, I'd say no. I'm a mom. But all us moms and dads out there caring for our children with special health care needs need the lobbying, legislative, judicial and civil rights support that other caregivers are receiving. Just because we're parents taking care of our kids doesn't mean we aren't suffering from the same increased stress, depression and anxiety, with lowered immune system and a shortened lifespan as has been found typical of adult children caregiving for their parents. And many of you will probably agree with me that the additional grief of a parent coming to terms with their child's special health needs, and for some, the constant struggle between life and death of our children, serve to intensify horribly the levels of stress, depression and anxiety. We need help. Our children need their rights protected. The Administration and Congress need to pay us attention.

Why cutting state Medicaid budgets is a terrible economic decision

In 2003, the national office of ARC published an article focusing on the economic impact of cutting the state Medicaid budget. Considering the number of states currently attempting to do the same thing, the article's explanation of the mathematics of cutting state Medicaid budgets is extremely timely. The basic logic is that for every dollar of state spending cut, the state loses at least $1 in federal funding. It's because the federal government matches state medicaid spending, by percentages ranging from 53% to more than 80%. (The acronym for the federal matching funds percentage is FMAP). So in 2003, in Hawaii, for every dollar the state spent on Medicaid, it received $1.43 from the Federal government. This sums it all up:

In 2001, Hawaii spent $308 million of state dollars and $455.8 million federal dollars on Medicaid. This resulted in $743 million in new business activity in the state leading to the creation of more than 7,000 new jobs. Every $10 million cut in Hawaii’s state share of Medicaid spending could lead to a loss of $29 million in state business activity, resulting in 286 jobs lost in the state. Source: Families USA, Medicaid: Good Medicine for State Economies; January 16, 2003.

This could be summed up as the "cut off your nose to spite your face" approach to economics. What it also means is that for every $10 million the state (in this case Hawaii) cuts from it's Medicaid budget, the community of individuals with disabilities and special health care needs actually loses $2.43 million worth of services. The states forget to tell us that when they are going on and on about how they have to make the cuts someplace and we all need to just take it on the chin, or grin and bear it, or whatever platitude you're hearing from your state officials. The federal Stimulus bill enacted by Congress on February 17 of this year added $86.6 billion to the FMAP for the states. Each state's share of federal funding increased by at least 6.2%. Here's the list of how much additional FMAP funding each state is due to receive. The question is, with all the state cuts in medicaid funding happening across the country, what is going to happen to this potential increase in federal funds? Especially since

States would only be eligible for the FMAP increase if they ensure that their Medicaid eligibility criteria and enrollment/renewal procedures are no more restrictive than those in place on July 1, 2008.

So how narrowly are we going to define "Medicaid eligibility criteria and enrollment procedures"? In Hawaii, for example, the state put into effect substantial cuts in personal services (including skilled nursing) for children with disabilities under the age of 13. The letter sent out to parents on July 3, 2008 stated services were going to be re-evaluated for cuts for any child in a home based waiver program under the age of 13 and receiving more than 29 hours of services per week. Then in December, Hawaii cut another chunk from the personal services received by these same children, along with other participants (regardless of age) who were enrolled in the state's Medicaid 1915(c) waiver program providing Home and Community Based Services. I haven't heard anything about these services being reinstated. And I've already uploaded news articles showing another seven states are also in the process of completing first and in some cases, a second round of medicaid cuts. A lot of these cuts are aimed at the home services that allow our kids to stay at home with us. And in the middle of all this, what is happening with the funds for EPSDT? Mention of the program is strangely missing from the vast majority of articles I've been able to find on cuts in services for children with disabilities. I am not an economist. And right about now I'm beginning to wonder if the states need forensic economists in order to figure out where the EPSDT funding is being spent now and what's happening to it in the greater scheme of states cutting medicaid related services. EPSDT cannot be cut. Whether the services are provided through medical providers or your school district, your state absolutely cannot cut any service a doctor says is medically necessary for your child. If your child needs formula because he or she feeds through a tube, it can't be cut. If your child requires 24/7 skilled nursing, it can't be cut. If your child requires diapers, or specialized bathing equipment, these expenses cannot be cut. But they are. So what has happened to the EPSDT funds?

More documents uploaded to SCRIBD

I've just uploaded another twenty documents to SCRIBD. Just click on the SCRIBD widget at the top of the left column to access them.

MA, MI and NY facing cuts in programs for people with developmental disabilities

An April 20 email newsletter put out by the ARC of Colorado summarized budgets for services for individuals with developmental disabilities in six states.

state legislative funding situations for DD services: MN is looking at graduated sales tax increases to particularly benefit persons with developmental disabilities and the elderly. In MD, a legislative proposal to increase the state alcohol tax to deal with the WL was defeated in the last days of the session. MA is expecting severe cuts in family support programs. MI is experiencing devastating reductions in state revenue and program funding. VA is restoring cuts previously made to waiver programs as a result of an overturn of a gubernatorial veto and The Arc in VA is working on a new Autism waiver (Carol—Betty, you may get a call.) NY is still waiting for the last shoe to drop re: state funding for DD services. They do not expect any outright reductions but, for the first time in 25 years, do not expect any increases.

A possible problem of priorities?

According to the subtitle of an article in today's Wall Street Journal,

Social Security and Labor Department Would Get New Funding to Review Disability and Jobless-Insurance Claims

. Over three thousand people are being hired to interview 188,000 recipients of disability payments. The total cost is $13.7 billion, and its expected to save the federal government $35 billion to find all these disability cheaters. As I keep reporting, state after state is cutting the valuable services needed to keep children with disabilities at home with their families and out of institutions. The civil rights of these children are being violated on a level unheard of in American history, by state paid officials. Who is going to do something about this problem? I'm all for saving government money, but the children need to be helped. Whose priority are they?