Their Lifelines

I try to limit the number of posts I write on political issues. Politics divides people, and I don't want to perpetuate that divisiveness. But, August 2nd is just days away and our politicians can't seem to play nice. As a result, I am scared to death.

There are many things on the chopping block, but the two things of primary interest to me are Social Security and Medicaid. Those two programs are the lifelines for my children. Jessica's SSDI is her only income, and it is already too low to actually live on. Ashley, Jessica and Ronnie rely on Medicaid for their health insurance. They need the medicine that Medicaid pays for to continue to live. They need the surgeries, the interventions, the assistance. None of those things are a nicety or an extra - it is their life. Just one of Ashley's seizure meds costs $450 a week! If she misses one dose, a lifethreatening seizure is a real possibility.

So please, Politicians, get your acts together, but don't do it on the backs of our country's most vulnerable. I'll gladly pay increased taxes if you leave my children's benefits intact.

A Balanced (?) Budget

I wrote both in January and February about the budget woes faced by my homestate, Virginia, and how much of the budget balancing was being done by cutting services to people with disabilities.

Last Sunday, our General Assembly passed the budget bill, and although things were not as bad as expected, they are still not good. I also worry that unless the economic situation in both Virginia and the rest of the country improves, this might just be the tip of the iceberg.

Here are the budget results as they related to people with disabilities:



BUDGET UPDATE

The Conference Committee completed their work yesterday and just a few hours after their report was printed, the General Assembly passed Virginia's 2010-2012 Biennium Budget.

Restorations of home and community based services in the 2010-2012 budget include:
• 250 new ID Waivers for individuals/families on the ID Waiver waiting list (start date of 7/1/10)*
• Elimination of the proposed cut to respite services. *
• Elimination of the proposed cut to HCBS Waiver provider reimbursement rates *
• Elimination of proposed freeze on HCBS Waiver enrollment *
• Elimination of proposed cuts to Medicaid podiatry and optometry services.*
• Monthly income for HCBS Waiver eligibility would not be reduced from 300% SSI to 250% SSI *
• No cuts to consumer directed services

Cuts/Policies that remain in the 2010-2012 VA Budget include:
• $23 million to rebuild a 75-bed institution at Southeastern Virginia Training Center in Chesapeake.
• $24 million to renovate Central Virginia Training Center, an institution in Lynchburg.
• 750 ID Waivers and 134 DD Waivers eliminated (this would make 4 years of no new DD Waivers).
• Assistive Technology (AT) will be reduced from $5,000 to $3,000 per year in FY12.*
• Environmental Modifications (EM) will be reduced from $5,000 to $3,000 per year in FY12.*

*-Restorations dependent on FMAP funding. Like many other items in the budget, these restorations are contingent upon a 6 month extension of the enhanced FMAP (a temporary increase in the federal share of Medicaid spending). On Thursday of last week, the U.S. Senate passed the FMAP extension, which was included in the American Workers, State, and Business Relief Act of 2010 (H.R. 4213), by a vote of 62-36. The U.S. House of Representatives has not yet decided on whether to adopt the Senate bill or develop its own bill, which, after passage would be conferenced with the Senate bill.

What happens next?

The budget bill now goes to Governor McDonnell for his review. The Governor has the ability to propose amendments to the budget before the General Assembly's veto session on April 21st.

I hope and pray that things do not get any worse than they already are...both in my state and in yours.

Let's Rethink Institutional Focus

I know I've written a lot recently about the frightening and sad state of disability issues in my home state, Virginia. This is another of those posts. Virginia, long recognized as one of the worst states in providing services to people with disabilities, is sinking even further down that list, this time to 49th out of 50 states.

Why? Because once again the focus is shifting to putting people with disabilities into institutions rather than in the community.

One of our state's newspapers published an Op-Ed column this past weekend from Howard Collum from the ARC of Virginia (formerly known as the Association for Retarded Citizens. That name has been dropped and only the initials are used today).

It is well worth your time to read. And please know, what is happening in Virginia may already been happening in your state, or will soon. The state of the economy is resulting in rash and uninformed decisions by legislators forced to produce balanced budgets.

We need to all voice our committment to community living for everyone, disabled or not.


Daily Press Publishes Op-Ed by Howard Cullum,
President of The Arc of Virginia

February 28, 2010
Our Virginia state government is facing its biggest fiscal crisis since the Great Depression. The economic downturn and the loss of millions of American jobs has dramatically reduced tax revenues that pay for basic government services at all levels - federal, state and local.

Our state and local governments can't print or borrow money to solve the problem. State and local budgets must be balanced. The governor and General Assembly members have the responsibility to adopt a balanced 2010-12 budget.

While the budget cuts will be challenging, our elected officials need to look beyond short-term 2010-12 budget decisions. There are clear opportunities to reform and remake state-funded services for the future.

The Arc of Virginia has been working hard over the past year to have the state step back and reconsider its 2009 decision session to rebuild a 75-bed training center for persons with intellectual disabilities at the Southeastern Virginia Training Center (SEVTC) in Chesapeake. The decision to rebuild 75 beds was made after then-Gov. Tim Kaine had recommended closing SEVTC by June 30, 2009, as part of his budget recommendations. In addition to the rebuild on the current campus, the General Assembly for the first time ever authorized state bonds to finance 90 community beds in the Tidewater and Peninsula communities for persons leaving SEVTC.

Subsequent to the rebuild decision, a state-funded review of SEVTC residents by a nationally recognized firm concluded that all current SEVTC residents could be served in community homes. The Arc spent the rest of 2009 meeting with Kaine's Cabinet officials and agency leadership to obtain a deferral of the rebuild until the General Assembly could reassess this issue at the 2010 session.

The Arc's efforts to defer the SEVTC institution rebuild were not successful. Our Arc families were shocked by the state's decision because all of the residents can live in the community and because of the financial cost.

The institution rebuild will cost $23 million for 75 beds or $306,000 per person to build a house on the campus. Are there no homes available in Tidewater for less than $1.5 million? Meanwhile, the state is funding the building of 90 community beds for $8.4 million or $93,000 of state funds per person.

The Arc of Virginia has been on record opposing the SEVTC facility rebuild because it continues and reinforces the stereotype that there are some people with intellectual disabilities who can only be served in institutions. This is simply not true. There is no special class of persons who cannot be served in the community.
No other state is going down this rebuild road. In fact, 11 states have closed all their state intellectual disability institutions and shifted to community care. The Arc believes that the growing community wait list problem is tied to Virginia's continuing institutional focus.

Today, the average annual cost per person in one of the five state training centers is $194,000. The average cost of care for those in community homes is $95,000. Our families on wait lists don't understand why our revenue-strapped state government is insistent on using our scarce taxpayer dollars to pay three times to build and twice to operate state institutions.

The Arc believes the 75-bed rebuild violates the Americans with Disabilities Act's community integration requirement. The Arc felt so strong about this issue that it requested the Virginia Office of Protection and Advocacy to bring legal action in federal court against the Kaine administration last October seeking to stop the SEVTC rebuild. The judge ruled in December that the case was not "ripe" for judicial action as the rebuild had not yet occurred and no one was as yet in it.

In a letter dated Jan. 29, The Arc asked Gov. Bob McDonnell to suspend the SEVTC rebuild because of the high construction costs, the high operating costs, the continued segregation of persons due to their disability and the adverse impact on Virginia's future ability to fund critically needed waivers for persons now living with their families all across Virginia. These wait lists are now more than 5,900 persons with no new waivers recommended for the next 21/2 years.

It is important to understand that these persons on the waiver wait list meet the same eligibility as the residents of the state institutions. In fact, families "waive" their legal right to institutional care and sit on the waiting lists. Why? They want community care for their sons and daughters, not placement in an institution.

The issue is all about the future. The Arc wants Virginia to turn the page and reform its antiquated institutional system and adopt a "community for all" policy.

What about the persons now living in the institutions? What will happen to them? The answer is quite simple. These people will move to small community homes with all the individualized supports they need and deserve. How does The Arc know this will work? It is already being done all across the country. In addition, we're already doing it in Virginia and have been doing it here successfully for the past 40 years. Today more than 4,240 persons are already living in community homes funded by the waiver. The 5,900 people on the waiver wait lists are living at home. The 4,300 school-age children with severe intellectual or multiple disabilities attending public school special education programs are living at home.

The scary number for The Arc is the 17,000 persons with intellectual or developmental disabilities living at home with parents 60 years or older. These are the persons who will need help in the future as their parents become physically unable to continue as caretakers or die. These families do not want institutional placements for their family member; they want community care.

What about the current institution staff? What will happen to them? All the direct care and medical/clinical staff will still be needed. The Arc supports state operation of community homes using existing staff. There are concerns by families about the need for a state-operated safety net. The state can fulfill this role in community settings.

If our state government is really the country's best-managed state, it can surely step back and reassess an earlier decision to be sure the public policy and fiscal implications are understood and sound. It is the prudent and common sense thing to do. It takes leadership. The Arc is asking our governor and legislators to provide it.

This Great (?) Commonwealth

This is turning into a banner year here in this glorious Commonwealth in which I live. First, the state's budget is in dire straits - there's no disputing that. But our legislators, in their infinite wisdom, have decided to balance that budget by cutting health care for the poor and disabled and reducing education funding.

It probably comes as no surprise that most of the legislators are good old boys whose children are grown and healthy.

Today, however, I discovered the icing on the cake.

State Delegate Bob Marshall of Manassas says disabled children are God’s punishment to women who have aborted their first pregnancy.

Now I understand. God has spoken and His apostles are just following His commands. Or so they think.

Jerks - big stupid jerks.

****UPDATE****

In this morning's Richmond Times Dispatch newspaper, Delegate Marshall claims we misunderstood him. Too little, too late, Bob...

Facebook group calling for Mr. Marshall's resignation

Virginians Against Bob Marshall's Ignorance

Petition Calling for Delegate Marshall's Resgination

Will A Grassroots Movement Work?

The Virginia Alliance for Community today called on all candidates for statewide office and House of Delegates to adopt a “Community for All” platform that reforms Virginia’s system of supports for persons with intellectual and other developmental disabilities. The Alliance -- formed in 2008 by the Virginia Board for People with Disabilities, the Partnership for People with Disabilities, the Virginia Office for Protection and Advocacy, and The Arc of Virginia -- provides a unified voice in advocating for the civil rights and needed services for Virginians with intellectual and other developmental disabilities.



What’s the Problem?

--- Virginia continues to inappropriately segregate persons with intellectual and other disabilities in expensive state institutions (Training Centers).

--- Training Center costs continue to rise and have now reached an average of $194,000 a person a year at the state institutions.

--- Community care through the ID/MR waiver for persons living in congregate settings, primarily waiver group homes, costs $95,000 per person annually -- half the cost of institutional care for individuals with equivalent levels of need.

--- Virginia is one of only 10 states that have not closed any state operated institutions for persons with intellectual and other developmental disabilities. Eleven states have already closed all of their state-operated institutions.

--- Training Centers are old and in growing need of major repairs -- the “youngest” buildings at NVTC and SWVTC are already over 30 years old. Residential buildings at CVTC, SEVTC and SVTC are much older.

--- The potential costs to rebuild or renovate all five state Training Centers would well exceed $100 million dollars, which is unjustifiable, particularly in a period of limited state revenues.

--- Spending scarce state dollars to rebuild and operate state institutions means fewer dollars available in the future to address the state’s growing waiting lists for the ID and DD waivers -- well over 5,000 persons are already waiting.

--- There are now 17,000 individuals with ID or DD living at home with parents 60 years or older. These individuals will want and will need community supports as their caregivers die or can no longer provided needed care

--- Continued maintenance of large state Training Centers runs counter to the service design both desired by individuals with ID/DD and being pursued by the Commonwealth. Through its System Transformation Grant and Money Follows the Person initiative, Virginia is making great strides to develop an ID/DD service system that is person-centered and promotes community integration.

It is NOT reasonable to segregate people in institutions when experience and research prove that even people with significant disabilities and intensive needs can be supported in the community.

It is NOT reasonable to continue to invest scarce public dollars operating large, inefficient state institutions when there is a better way.

It is NOT reasonable to deny persons with disabilities the right to live among us in the community if needed supports are provided.

What’s the Solution?

--- Commit to transition Virginia’s segregated, institutional system by adopting “Community for All” policy.

--- Halt future plans to rebuild state Training Centers. Virginians with the most significant disabilities can -- and do -- live in their own community homes when appropriate supports are available to them. Capital outlays can be leveraged with community housing money to significantly expand available, limited state dollars.

--- Consider the fiscal reality. Is it the best use of limited resources to spend $194,000 to support an individual in a state operated institution when individuals with like needs are being supported in the community for half that cost?

--- Make a true long-term commitment to eliminating waiting lists for waivers and other supports by developing and adopting a reform plan that transitions Virginia from its inefficient institutions to innovative, person-centered supports in the community.

Now is the time for disability reform in Virginia. It is no longer morally or fiscally responsible to invest in segregated settings for our citizens with disabilities. As friends, neighbors, self-advocates, and taxpayers, we ask all state level candidates -- gubernatorial and legislative -- to end this segregation and make community living for all Virginians with disabilities a priority in their campaigns as well as in their legislative initiatives.

Today I am thankful that I have the resources to provide a home for my children, a real home - not an institution.

Special Olympics Bowler?

Dear President Obama,

I am a single mother of four children, three of whom have significant disabilities. In addition to working a full time job and several part time jobs to provide a home and a life for my children, I also devote a huge amount of time and energy to advocating for their rights.

I want people to know my children for the special people they are. I want their unique talents, their sunny smiles, and their unconditional acceptance of others to be recognized and not ridiculed. It is a never ending battle with school systems, medical systems, recreational organizations, retail organizations and church groups to have my children accepted and not ignored or made fun of.

During your run for the Presidency, I posted on my blog your recorded comments about your support for people with disabilities. I was impressed and I shared those impressions with everyone I could. I voted for you and urged others to do likewise.

But, your comments last night on the Jay Leno show likening your lack of bowling prowess to the Special Olympics left me less than pleased. I trust you didn't mean for your comments to sound disparaging, but for the viewers who may already have been in that group of people who take pleasure in disparaging people with disabilities, your comments verified their feelings.

I would love for you and your family to meet my children. My birth son, Chip, is 18 years old, heading to college this year, and has been a huge advocate for his siblings with disabilities. Ashley, my 14 year old daughter whom I adopted at age 2, is deafblind, has seizure disorder and currently has three brain tumors. But she is also wild and crazy, a typical teenager who can get in trouble at school for cursing at her teacher in sign language (fortunately the teacher didn't know what she was signing), and has a smile that can light a room. Jessica, my 18 year old daughter who was adopted at age 9, is diagnosed with mental retardation and reactive attachment disorder. She is learning to control her aggressive tendencies, and loves nothing more than playing basketball for the Special Olympics. She loves Hannah Montana and the Jonas Brothers and dreams of the day she may marry and have children. And then there's Corey. Corey joined my family 4 years ago when he was 12 years old. He was living on the streets of Baltimore with his drug-addicted, prostitute mother. He is diagnosed with Asperger's Syndrome and developmental delay. He is in JROTC at his high school and dreams of joining the Marine Corps when he graduates. He wants to serve our country in whatever way he can.

These are just four of the people whose dreams of acceptance were harmed by your comments. Will you consider meeting them and showing them that you do support people of all abilities, and that their dreams are just as important as anyone else's?

Thank you, Mr. Obama, and I look forward to hearing from you soon.

"Don't Come To Washington, D.C.", They Said

Are you a person with a disability or the parent/spouse/friend/caregiver of a person with a disability? Were you planning on attending the inauguration today in Washington, D.C. ? If so, I’m sure you’ve heard by now that the event is far from accessible.

The Joint Congressional Committee on Inaugural Ceremonies, in fact, has issued warnings that some people with disabilities interpret as a message that says, "If you have a disability, please do not attempt to attend the inauguration."

On its Web site, the committee warns that handicapped parking will be limited and not close to the Capitol, and that there will be fewer drop-off points for people using wheelchairs. Accessible seating is limited for those with tickets to the swearing-in ceremony. And, "persons in wheelchairs or utilizing walkers should be aware that they will need to move across bumpy surfaces, grassy areas and possible icy areas (depending on the weather)."

"This is like a big, bold sign that says if you're a person with a disability, this is not your event," Richard Simms, executive director of the D.C. Center for Independent Living said.

The inaugural committee can't work crowd-control miracles, but as Andrew Imparto, president and CEO of the American Association of People with Disabilities has said, "We'd hope the congressional committee could figure out a way to accommodate everybody. Our experience is that when accessibility is taken seriously, it makes for a smoother event all around."

I know soon-to-be-President Obama is very, very busy with the life-changing events that have been put in motion, but I would like him to remember the story he told of his father-in-law in this video he made during his campaign. More than anyone, Barack and Michelle Obama should be sensitive to this issue…

Good News - Bad News

GOOD NEWS:
Record Number of Registered Voters

For the first time ever, over 5 million Virginians are registered to vote. And the best news – 40% of the newly registered voters are under the age of 25. We hear and see a lot of bad news about young people, but I’m very proud of those in my state we are taking their responsibility to vote seriously.

BAD NEWS:
Child Mistreated While Family Pets Fed and Cared For



She is 14 years old, weighs only 48 pounds, and her father and stepmother only allowed her to drink 6 ounces of water a day. Besides toast, she took in no other nourishment. Her brother was fed normally, and even the family dogs were fed normally and had recently been taken to the vet. Her parents have been arrested and as the article points out, may get up to 4 years in prison. 4 years??? Is that all???

The girl’s teacher complained in 2005, but Child Protective Services left the girl in the home and ordered the stepmother to go to counseling. Doesn’t seem to have worked, now does it?

Inappropriate, Often Dangerous Practices

Last September, I wrote a post titled Takedown or Hug, in which I discussed the use of physical restraints by school personnel. I believed then and I believe now that restraints should not be necessary and not used. I understand the rationale I hear from school staff that they are only restraining to protect the child in the middle of a meltdown as well as the other children in the classroom or school. However, my belief is that were proper supports in place prior to the meltdown, perhaps the meltdown would not have happened at all. I am not in a classroom and I do not a group of 20 or more students, some of whom may have disabilities which may result in outbursts of anger and aggression. But, I am the parent of such a child, and I have learned over the nine years that I have parented her that there are other, better ways to diffuse a situation.

An article appeared in this week’s New York Times titled, Calm Down or Else. The author of the article describes several situations in a school classroom in which physical restraints were used. While on the surface, some of the restraints may have seemed appropriate, others described were obviously mishandled situations. The author poses the question “Have the incidents of restraint being used increased because more and more children with disabilities are being mainstreamed?” Again that supposition screams out to me that the proper supports are not in place. Asking a general education teacher who has not been trained in special education services to anticipate issues encountered by a child with an emotional disability is not going to work. Train that general education teacher – provide appropriate special education support in the general education classroom – teach everyone to notice the triggers that may set a meltdown in motion – in other words, know your students, anticipate their needs, and always be aware of the nuances of behavior occurring in the classroom.

The author ends his article with the concerns that unless schools adopt policies and standards, and unless those things are clearly communicated to parents and school staff, abuses and even deaths from improperly applied restraints will continue. And, as one of the experts cited in the article says, some parents want their child restrained and some are vehemently opposed, further complicating the jobs of those professionals who are caught in the middle of the fray.

I believe it is time for a national look at this issue, and while that is happening, I believe school systems need to adopt some transitional policies and standards to ensure the safety and RESPECT of each and every student in their classrooms. And just for the record, I DO NOT WANT ANY OF MY CHILDREN RESTRAINED.

**Special Note**
One exception to my stand on never restraining a child in a school is that situation where a child has brought a weapon to school. At least in my school district, all schools have a resource (police) officer assigned to the school. That officer is trained to handle weapon related situations, regardless of the age of the offender and should be the first to respond. However, if the situation is such that a teacher must act to protect others from the actions of a student with a weapon, I certainly pray that teacher has been trained and is capable of subduing the child with the weapon.

Where Do You Stand?

I searched You-Tube to see if I could find anything about where the 2008 Presidential candidates stand on the issues of disability. I couldn't find much, but here are three items posted by the National Autistic Society of America. I'll keep looking and post more as I find them.

Barack Obama



Mitt Romney



Hillary Rodham Clinton