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Call To Action

February 3rd, 2012

TODAY!!!!!!!
Please CALL  the legislators in your local chapter delegation with the following message:

“The ID and DD Waiver waiting lists must remain a priority. Please support funding for additional ID/DD Waivers beyond what is outlined by the DOJ agreement.  More than 7,000 people are waiting for ‘A Life Like Yours’”

Use one of these talking points…
•         More than 7,000 Virginians with ID/DD are on waiting list for The DOJ agreement
only requires 200 Waivers per year.
•         More than 1,000 individuals on the list have been waiting 5 years.    
•         The waiting list is growing at a pace of more than 2 people per day.
•         If Virginia only funds what is required in the agreement, our waiting list will exceed  
10,000 by the end of the agreement.  This is a 92% increase.”     

Thanks so much for your help!

Assistant Attorney General Thomas E. Perez Speaks on Virginia Ada Settlement Call

January 27th, 2012

~ Thursday, January 26, 2012

Good morning. Thank you for joining us today. In the Civil Rights Division, we are in the opportunity business. We expand opportunities in a wide range of areas, and today’s agreement provides opportunity that will transform the Commonwealth of Virginia’s system for delivering services to individuals with developmental disabilities, including intellectual disabilities, and improve the lives of thousands of Virginians with developmental disabilities.

More than a decade ago, in its landmark ruling in the case of Olmstead v. L.C., the Supreme Court ruled that, under the Americans with Disabilities Act, states must serve individuals with disabilities in the most integrated setting appropriate to their needs.  The decision, which has been called the Brown v. Board of Education of the disability rights movement, recognized that failing to give people with disabilities a meaningful opportunity to live in the community instead of in an institution is discrimination under the ADA.  The Supreme Court recognized that unnecessary segregation of people with disabilities deprives them of the opportunities people without disabilities take for granted, like making friends, working, and participating in community life.

Freedom and opportunity proved elusive, and the promise of Olmstead was not realized. In 2008, DOJ opened an investigation of the Commonwealth of Virginia Training Centers. In 2009, we expanded that review to examine statewide practices. We issued a letter of findings in 2011. We found that Virginia was unnecessarily institutionalizing people with developmental disabilities and placing others at risk of institutionalization.  Following our letter, we immediately began discussions with Governor McDonnell.

Today’s agreement will bring Virginia into compliance with the ADA and the Olmstead decision and provide improved community living options for people with disabilities and their families by building a comprehensive, community-based system that can meet the needs of all individuals with  developmental disabilities, including those with the most complex needs.  The agreement will provide a wide range of services to prevent the institutionalization of individuals with developmental disabilities who want to remain in their own homes and communities.  The agreement will also ensure that individuals currently in institutions will have a real opportunity to receive community services that meet their needs.

I want to thank Governor McDonnell for his leadership in reaching this landmark agreement.  This agreement incorporates the Commonwealth’s own vision and goals for its developmental disabilities system.  The trust fund recently created and funded with $60 million dollars was concrete evidence of Governor McDonnell’s commitment to implementing this agreement.  I would also like to thank Attorney General Cuccinelli, Secretary Hazel, and Commissioner Stewart and their staff for their role in crafting this agreement.   In addition, I would like to thank United States Attorneys MacBride and Heaphy and their staff for their assistance to us.

Virginia is a state with strong and committed advocates who have long been pushing for improvement of the Commonwealth’s developmental disabilities system.  Throughout our investigation, we met with stakeholders across the Commonwealth, to learn about what is and is not working for people with developmental disabilities.  We heard their problems and concerns, and ideas for addressing them, as well as their successes.  We heard from families who are barely hanging on while their loved ones sit on long waitlists for community services and from self-advocates wanting more opportunities to work and live independently.  We heard from the families of persons now living in institutional settings who worry whether the needs of their loved ones can be met in community settings.  We also met with some individuals, including some with complex needs, who are being successfully served in the community.  Our agreement draws on the input from these critical stakeholders about how to best meet the needs of all Virginians with developmental disabilities.   Continued collaboration with and input from these stakeholders will be a critical part of the implementation of the agreement.

There are two primary goals of the agreement:

• First, to prevent the unnecessary institutionalization of individuals with developmental disabilities who are living in the community, including thousands of individuals on waitlists for community-based services.
• Second, to ensure that people who are currently in institutions —at the Commonwealth’s training centers or in other private but state-funded facilities —have a meaningful opportunity to receive services that meet their needs in the community.

This agreement is a win-win-win for the Commonwealth and the people of Virginia.  First, it fulfills the Commonwealth’s legal obligation to comply with the ADA’s civil rights requirements.  Second, it fulfills its fiscal obligation to Virginia taxpayers.  By expanding cost-effective community-based services and reducing its reliance on expensive, institutional care, the Commonwealth will be able to use its limited resources to meet the needs of a larger number of its citizens with developmental disabilities.   Finally, the agreement will serve the Commonwealth’s moral interest in serving people with developmental disabilities in the way most conducive to independence and full participation in community life. In short, this agreement enables the commonwealth to serve more people in a better fashion, and to spend scarce dollars in a more effective manner.

The agreement will provide relief for more than 5,000 Virginians with developmental disabilities and will have an impact on thousands more individuals receiving developmental disability services.  The agreement will create a total of approximately 4,200 home and community-based waivers for people who are on waitlists for community services and individuals transitioning from institutional settings over a ten year period.  Almost 3,000 of these waivers will be targeted to individuals with intellectual disabilities on the waitlist or youth with intellectual disabilities in private facilities; another 450 waivers will be targeted to individuals with non-intellectual developmental disabilities on the waitlist or youth in private facilities; and another 800 waivers will be targeted to individuals choosing to leave the training centers.  An additional 1,000 individuals on waitlists for community services will receive family supports to help provide care in their family home or their own home.

Under the agreement, the Commonwealth will also create a comprehensive community crisis system with a full range of crisis services — including a hotline, mobile crisis teams, and crisis stabilization programs — to divert individuals from unnecessary institutionalization or other out-of-home placements.   The agreement requires the Commonwealth to develop and implement an “Employment First” policy to prioritize and expand real work opportunities for individuals with developmental disabilities.  In addition, the agreement will create an $800,000 fund for housing assistance to facilitate opportunities for independent living for people with developmental disabilities.  Finally, the agreement requires the Commonwealth to create a strong and comprehensive quality and risk management system to ensure that community-based services are safe and effective.

The agreement is court enforceable and will be monitored by an independent reviewer that was jointly selected by the United States and the Commonwealth.  The independent reviewer has a broad range of experience in disability service systems, including as superintendent of a state-operated facility, regional director charged with developing a range of community services, and executive director of a provider of community services to individuals with the most complex needs.

Today’s agreement is part of a broad, nationwide effort to enforce the Olmstead decision.  In the last three years, the Civil Rights Division has joined or initiated litigation to ensure community-based services in more than 35 matters in 2o states.  And we have investigations pending in a number of other states. We reached comprehensive agreements with the states of Georgia and Delaware that, like the agreement with Virginia, provide broad relief for thousands of individuals with disabilities.  Our enforcement covers a wide range of settings – from state-operated centers for people with developmental disabilities, to state psychiatric hospitals, to state-funded private adult care homes and nursing homes, to segregated day programs.  It also covers a broad range of populations – from people with intellectual and developmental disabilities, to people with mental illness, to people with physical disabilities.

This is a landmark agreement, a blueprint for sustainable reform, and a model for ADA Olmstead enforcement going forward.

Today’s agreement will allow Virginia to avoid costly litigation and move directly to providing the services that its citizens with disabilities need to live in their communities and to have opportunities like people without disabilities.  Across the country during the deinstitutionalization movement of the 1970s and 1980s, doors were opened.  But the community infrastructure was lacking, and the promise of integration for people with developmental disabilities remained elusive. We can – and must – do better as a nation, and this agreement will serve as a national model for efforts moving forward.

The Commonwealth and its leadership are to be commended for their leadership in tackling this problem, and I thank them for their cooperation.  This agreement is about choice, opportunity, expanded services and quality assurance. We look forward to continuing to work with the Governor and with community stakeholders in order to implement this historic agreement

Commonwealth of Virginia and U.S. Department of Justice Settlement Agreement

January 26th, 2012

TO:                  Stakeholders in the Virginia System of Services for Individuals with Developmental and Intellectual                Disabilities

FROM:            James W. Stewart, III, DBHDS Commissioner

DATE:            January 26, 2012

RE:                  Commonwealth of Virginia and U.S. Department of Justice Settlement Agreement

Today, Governor McDonnell announced that the Commonwealth of Virginia has reached a settlement agreement with the U.S. Department of Justice (DOJ). DOJ began an investigation in 2008 that was expanded to cover Virginia’s entire system of services for citizens with intellectual and developmental disabilities, including all five training centers and community services. In its February 2011 findings letter, DOJ concluded that Virginia is not providing services in the most integrated and appropriate setting, is not developing a sufficient quantity of community services, and has a flawed discharge process at training centers. Since the findings letter, Virginia has been negotiating with DOJ to achieve a settlement agreement that ensures quality services for our citizens with developmental disabilities and avoids an extremely costly and lengthy court battle that would utilize monies needed to serve our citizens through direct support and services.

The settlement agreement includes the creation of 4,170 new Medicaid Waiver slots for individuals transitioning from training centers to the community and for the planned growth in the number of Waiver slots for those on the waiting list. The agreement also expands accountability and oversight in the community. Also, the agreement calls for the creation of an individual and family support program for 1,000 families each year to ensure that families who are assisting family members with intellectual disability/developmental disabilities (ID/DD) or individuals who live independently have access to some supports to continue to live at home; full implementation will occur in FY2014.

In addition, and in accordance with Virginia’s long-standing policy to transition to a community-based system of care, it is very important for you to know Virginia will provide a plan to cease residential operations at four of Virginia’s training centers by 2020. As such, a timeline has been developed for the closure of four of Virginia’s five training centers. These facilities will not be closed immediately as it takes time to ensure that individuals are moved safely into community homes that they choose and that are appropriate for their needs. The schedule for training center closure is as follows:

Southeastern Virginia Training Center (SEVTC) in Chesapeake, VA will remain open with a maximum census of 75 beds.

DBHDS will be working very closely with the individuals in training centers and their families and authorized representatives to ensure a safe, successful transition to the community in accordance with their choice.  In addition, our human resources office will be helping training center staff throughout this time of transition.

You will find more information about the settlement agreement and transition plans on our DBHDS Web site at www.dbhds.virginia.gov/settlement.htm.  This site will be updated periodically as new information becomes available so that you can stay informed on Virginia’s progress.

A great deal of effort will be required by many individuals and organizations across the Commonwealth as we ensure compliance with the terms of the settlement agreement.  We firmly believe that the result of the actions we have taken already and will be taking as a result of the settlement agreement will enable more individuals with intellectual and developmental disabilities to have the opportunity to thrive, living a life that is more integrated into the local community.  In addition, the system of services that will be in place will be one that utilizes public funds more effectively and efficiently. We look forward to working together with you for a brighter future for Virginians with disabilities and their families.

James W. Stewart, III

Commissioner

Department of Behavioral Health & Developmental Services

Richmond, Virginia

Happy 1st Day of General Assembly!

January 12th, 2012

After advocacy efforts at the budget hearings last week, here are 5 ways you can help keep the momentum going this week…..

1.       Budget Amendments- Between now and 5pm Friday (the deadline), The Arc of Virginia will be seeking support for budget amendments.  We will be focusing on ID Waiver Waiting List, DD Waiver waiting list and Medicaid Waiver ineligible requests and our partner organizations will put in requests relating to Personal Care hours, Medicaid eligibility and Waiver reimbursement rates.  PLEASE CALL your legislators TODAY, THURSDAY January 13 asking them to support The Arc of Virginia’s request for funding to help people with ID/DD on waiting lists. This will help us in our efforts to seek patrons/co-patrons (it is a very tight turnaround).  We will stay in touch re: developments.   (NOTE:  Chapter Delegations are  broken out in the attached ALLY Day Toolkit in case you need a list of local legislators.  Contact info is included as well. )

2.       Waiting List Press- This week, there is a critical need for media stories re:  the ID/DD Waiver waiting lists.  I cannot stress enough how important this is for our advocacy right now. Please help us with this press push by reaching out to local reporters between now and Friday.  Use background facts and talking points included in the ALLY Day toolkit and be sure to help them focus on our request of 1500 ID Waivers and 275 DD Waivers. If you have a reporter that will do a story, please let us know so we can keep them in the loop.

3.       ALLY Days—If you have not already done so, please let Jessica Fleenor know about the date/times your chapter plans to come to Richmond this session.  These visits help us increase visibility and the constant presence is invaluable with everything going on this year.    The toolkit to help you in planning your visits is attached to this email. Note that committee listings are not yet available.  We will be sure to send you an updated packet once they are.  Thanks to Jessica Fleenor and Charlene Reed for their hard work on this project.  (Board Members:  If you are involved with a partner organization that might be interested in helping out by doing an ALLY day, please contact Jessica at jfleenor@thearcofva.org).

4.       MLK Day Rally- Will take place rain or shine.  There will be a canopy, but be sure to bring an umbrella if it rains.  Flyer and Coalition priorities are attached.  Please make appointments with your legislators to maximize your time.   Looking forward to seeing you there!

5.       Advocacy Conference Calls-  We will be resuming our weekly advocacy calls this General Assembly session for strategizing/touching base.  First call will be held on FRIDAY, JAN. 13 at 12pm.  Call in number is 866-740-1260 and passcode is 6498481..  We will be sending out a doodle poll to help us schedule the calls that will follow.

—–

Media Clippings from Budget Hearings:

http://www.wtvr.com/news/wtvr-virginia-budget-hearings-arc-of-virginia-larrick-student-center-senator-henry-marsh-deborah-greene-intellectual-disabilities-in-virginia-20120106,0,2746742.story

http://www.washingtonpost.com/local/education/fairfax-residents-say-they-want-lawmakers-to-champion-education-and-social-services/2012/01/07/gIQAk9JzhP_story.html?socialreader_check=0&denied=1

http://www.dailypress.com/news/politics/dp-nws-state-budget-hearing-20120106,0,7814991.story

http://www.newsleader.com/article/20120107/NEWS01/201070317/Funding-sought-kids-mental-health-services

http://www.washingtontimes.com/news/2012/jan/8/va-assembly-will-have-pleas-more-mental-health-fun/

Preserve and improve access to essential community services that promote:

Virginia can strengthen community services and save scarce dollars. Investing in community-based services for people with disabilities reduces unnecessary and expensive inpatient hospitalization and state facility placements and avoids needless and costly involvement with the public safety system.

What You Can Ask the General Assembly to Do

For children, youth, and their families:

• SUPPORT designated and sustainable funding for developmental services for infants and toddlers with disabilities.
• REDIRECT $25 million in savings from Comprehensive Services Act (CSA) funding and REINVEST in critical children’s mental health crisis stabilization and crisis response services, additional child psychiatry, adequate case management and quality in-home services.

• SUPPORT restoration of rates for intensive in-home, therapeutic day treatment, and Residential A and B for children with severe emotional disturbances and at risk of being moved into an out-of-home placement.

For Virginians with intellectual and developmental disabilities:

• SUPPORT funding for 1,500 new Intellectual Disability (ID) Waivers and 275 Developmental Disability Waivers each year of the 2012-2014 Biennium.
• SUPPORT funding to provide support services to 1,000 Virginians with intellectual and developmental disabilities who have been denied Medicaid waivers due to level-of-functioning criteria ($5M SGF per year).
• SUPPORT proposed restoration of rates in the ID, DD, and DS waivers to July 1, 2008 levels.
• OPPOSE proposal to reduce the income limit for optional Medicaid eligibility group with income up to 300% of Supplemental Security Income (SSI) to 250% of SSI. This proposal will take away Waiver slots from current recipients on EDCD, ID, and DD waivers.

SUPPORT implementation of Employment First for ALL Virginians with disabilities.

• SUPPORT maintenance of designated general funds for the state match of 20% to draw a federal match of 80% for vocational rehabilitation services to employ Virginians with disabilities.
• SUPPORT restoration of funds for employment supports (LTESS/EES) for Virginians with disabilities. These services enable Virginians to maintain employment in the community and become self-supporting tax-paying citizens.
• OPPOSE proposed reduction in personal care hours allowed under the Elderly and Disabled Waiver with Consumer Direction (EDCD) from 56 to 48 hours per week.

For Virginians with mental health conditions, substance use disorders, and/or brain injury:

• SUPPORT funding and policies for drug treatment courts to divert non-violent, substance abusing- offenders from prison and into treatment.

• SUPPORT increased funding for recovery-focused services for Virginians with substance use disorder to include enhanced case management and outpatient services, increased number and availability of detoxification and residential treatment services, peer recovery support, supported housing, and employment.
• SUPPORT intensive recovery-focused services, including peer services, employment and housing supports for Virginians with serious mental illness to avoid hospitalization and/or incarceration.
• SUPPORT funding for the development of additional local Crisis Intervention Team (CIT) programs as well as for expansion of law enforcement drop-off capacity to foster CIT efforts.
• SUPPORT increased funding for Discharge Assistance Program (DAP) services to expedite transition of Virginians eligible for discharge from psychiatric hospitals to community-based services and housing.
• SUPPORT the proposed $1,000,000 in fiscal year 2014 and add $1,000,000 in funding for fiscal year 2013 to reduce chronic homelessness through the creation of permanent supportive housing.
• REDIRECT $10 million in Medicaid savings as a result of the transition to managed care and REINVEST the savings into additional services and adequate rates for Medicaid community mental health services.
• SUPPORT restoration of Brain-Injury funds and increased funding to secure infrastructure and workforce of community based services, and conduct surveillance, outreach, and technical assistance for Virginians with brain injury, including veterans and wounded warriors.

Celebrating International Day of Persons with Disabilities

December 3rd, 2011

By Dana Fink, AAPD Programs Assistant

This Saturday, December 3 is the 30th annual observation of the International Day of Persons with Disabilities (IDPD), a day established by the United Nations to promote a better understanding of disability issues worldwide.  It is on this day that I pause to give thanks to those who fought to protect the rights that I, as a member of the “ADA Generation,” sometimes take for granted.  Today I also recognize that some 80 percent of the disability community—our community—lives in developing countries.  For this 80 percent of our brothers and sisters, poverty is predestined, violence and abuse are rampant, and life expectancy is unacceptably short. 

This year’s IDPD theme is “Together for a better world for all: Including persons with disabilities in development.”  We must take this challenge seriously; we must work to ensure that development does not leave people with disabilities behind. We know that when people with disabilities are empowered to lead structural change in our communities, all of society benefits.  This inclusion keeps us from being marginalized and propels us toward true equality.   

This year’s International Day of Persons with Disabilities is a call to include people with disabilities in international development initiatives.  It is a call to hear our voices in the realization of the Millennium Development Goals.  It is a call to our government to ratify the Convention on the Rights of Persons with Disabilities (CRPD) a necessity if we hope to continue to serve as a paradigm for disability inclusiveness.

However, above all, it is a simple call for global solidarity for all people with disabilities. 

We at AAPD wish you all a happy IDPD celebration.  We invite you to join the fight ahead.   Call your Senators today and urge them to support ratification of CRPD.

An American Minority’s Road to Rights

October 28th, 2011

AAPD Remembers Susan Daniels, Disability Rights Advocate

October 22nd, 2011

DISABILITY IN THE NEWS

On Thursday evening we learned that long-time disability rights advocates Susan Daniels had passed away.
Dr. Daniels, a recipient of AAPD’s 2003 Betts Award, spent her long and distinguished career promoting equal opportunity for people with disabilities.  She was best known for the Social Security “Ticket to Work” program, which breaks down barriers to employment and offers supports to get into the work force.
No short note could capture her contributions to our community and to this country.  –

“Susan approached every disability issue with imagination, conviction, and tenacity.  She made a big difference. Things are better for hundreds of thousands of people because of Susan’s life.”
-Jim Dickson, AAPD VP of Organizing and Civic Engagement
“I will miss Susan Daniels encouragement and hope for a better world, and especially how her insights on how technology – mainstream and assistive – helps people with disabilities!”
-Jenifer Simpson, AAPD Senior Director for Government Affairs

‘The disability community has lost a tireless advocate and beloved friend. Susan’s husband John Watson has said it perfectly: “A life truly well lived”.’
-Ginny Thornburgh, AAPD Interfaith Director

NOT WITHOUT US

July 30th, 2011

Information on the upcoming hearings across the State next week.

Dates/times of public hearings are below, toward the end of this post.

 ——-

Department of Behavioral Health & Developmental Services

Budget Hearing Talking Points

——-

NOT WITHOUT US

KEY MESSAGE: We urge Governor McDonnell to SUPPORT “COMMUNITY FOR ALL”- Virginia MUST not neglect its responsibility to provide help to people with intellectual and developmental disabilities who are currently living in the community.  NOW is the time for system-wide reform.  Virginia must close its institutions (providing safe, successful and person-centered transitions), strengthen the Medicaid Waiver to ensure quality and reliable services for all recipients  AND provide help to the more than 6,400 people with intellectual and developmental disabilities who are still waiting for services.  These services can be symbolized as a three-legged stool-without one leg-the system is not stable!  And without addressing all three-we have not resolved the violations outlined in the DOJ letter.

Potential Talking Points (choose just a couple):

• We commend Governor McDonnell for his stated interest in helping Virginia transition to a true, community-based system of support for people with intellectual and developmental disabilities (based on remarks from state of the Commonwealth) We urge him to make the commitment to do it, taking the action necessary to ensure that we respond to ALL of the DOJ violations.

• In order to respond to DOJ, Virginia must support “COMMUNITY FOR ALL”-not only for the 1,100 who are living in the institutions, not only for those who are currently receiving Medicaid ID/DD Waiver services, BUT ALSO THE MORE THAN 6,400 INDIVIDUALS WITH INTELLECTUAL AND DEVELOPMETNAL DISABILITIES WHO HAVE BEEN DENIED SERVICES IN THE COMMUNITY.  The DOJ letter does not just address one group, it addresses all 3.

• This is Virginia’s moment. Will the state embrace this opportunity to truly address the civil rights violations that have gone on for centuries and plagued our Commonwealth’s history?  Or will our leaders be reluctant to take the action needed; only providing partial redress to the injustices faced by people with intellectual and developmental disabilities?

• We must not forget that in order to resolve issues raised in the DOJ letter it is ESSENTIAL that the Commonwealth utilize cost savings realized by this transition to strengthen Virginia’s community-based support. While there has been some acknowledgement by state officials that community-based Waiver rates must be strengthened, there has been NO COMMITMENT to help the more than 6,400 people with intellectual developmental disabilities and their families who continue to languish on waiting lists.  Many have been waiting several years for help; some have even waited for more than a decade.

• More than 5,400 people with intellectual disabilities are waiting for community-based services.  More than half (3,200) are identified as being in urgent need.  An additional 1,100 people with related developmental disabilities are on the DD Waiver waiting list.

• It is unacceptable that the people on the waiting lists, who require the SAME LEVEL OF SUPPORT as the individuals who are currently living in state operated institutions (yet have NOTHING), are being IGNORED in this discussion. It is not enough to fix the community-based services available through the Waiver-Virginia MUST provide help to those who are at risk of institutionalization due to waiting lists!

• The thinking that help cannot be provided to the waiting list families because of “pent up demand” (as was stated by a state official in a July public forum) would result in the continued violation of ADA.  If families on the waiting list are in need of residential services (including in-home and sponsored residential) in order to avoid institutionalization-then those services must be provided.  Families do not “gravitate” to group home placement just for the sake of it, in fact-most spend their lives trying to avoid it.   It is time for Virginia to stop making excuses-and start taking action.

• Virginia must make a REAL commitment to “Community for ALL”! Community for All means that no one with a significant disability is institutionalized to receive the supports they need.  Community for ALL means strong, quality community-based services offered through the Medicaid Waiver.  AND Community for ALL means HELP provided to the families on the waiting lists who are in DESPERATE need of support.

• FOR INDIVIDUALS—Describe what life is like on the waiting list for you/someone you know.

• FOR CHAPTERS— Provide vignettes.  “Who are the people on the waiting lists? Here’s an introduction to JUST A FEW of the more than 6,400”

o   INSERT LOCAL STORIES HERE-some examples…

§  A 40 year old woman with a Down Syndrome living with her 80 year-old parent.  She has never known the opportunity of employment, day program or living independently.  She has few friends/social connections-she is isolated from the rest of her community.    The parent asks himself/herself everyday—“What will happen when I die?” Where will she go?  Who will be there?  Will there be a Waiver provided before her parent passes away?

§  A 13 year old with Autism living with a single mom.  The child’s behavioral challenges lead to elopement and sometimes physical harm to parent.  There is no such thing as a “break” for this parent-the child requires constant support throughout the day and, due to wondering, most of the night.  There is no help-only  911. How long can Mom continue (physically, emotionally and mentally) being the sole provider of support?

§  A young woman is currently receiving services in the foster care system.  In less than 6 months, she will age out of these publicly funded residential services and have nowhere to go, no support services in place.   She has no family.  The only CHOICE for this individual is an institution, nursing home or a homeless shelter.  Where will she go? Will there be a Waiver to help her stay in the community?

§  A young man with significant medical issues utilizes a G-tube and a ventilator.  Due to these physical challenges, he requires 16 hours of nursing supports a day.  When he was born, an institution was suggested by the hospital staff, but the parents brought the child home so he could be part of his community.  Now, 25 years later, the family is still the sole provider of support-and the state is  nowhere to be found. Mother now has long-term illness and fears for the future.  Father has hurt his back due to lifting and transferring the son on the daily basis (who has been increasing in size).   There has been hospitalization after hospitalization, again no help.  Will a waiver be allocated to provide much needed relief?

§  All of these individuals are at risk of institutionalization.    Do they and their families not deserve the help they are asking for?  Are they not a priority for this Commonwealth?

• The key to transitioning away from institutions is you’ve got to shut the front door.  If it does not provide help to the thousands of families on the ID/DD Waiver waiting lists, Virginia will continue its reliance on institutional care, in violation of the ADA.   These families need help.  They are fighting for their lives.  A “mini-Waiver” will not solve the problem, it is not the answer.  Virginia must fund 1,500 comprehensive Waivers per year in order to provide the support that is needed.

• In 2009, Virginia PROMISED waiting list families that help would be coming.  It required the budget to fund a minimum of 400  ID Waivers and 67 DD Waivers a year, while the state established a plan to eliminate the list all-together.  The plan was written-but sits on a shelf.  Meanwhile, the waiting list continues to grow.

• Our estimates indicated that the waiting lists are growing at a pace of more than 2 people per day. If the Commonwealth does not address growth of the waiting lists-it will not address the community capacity issue- and we will have not addressed the violations outlined in the DOJ findings letter.

• Our estimates indicate waiting list growth has been an average of 960 individuals per year for the last three years. To even BEGIN reducing the waiting list more than 960 Waivers must be funded per year.  To begin aggressively reducing the waiting list at a pace that will eliminate the waiting list within ten years (as was promised by the General Assembly)-Virginia must fund 1,500 Waivers a year.   This amount is higher than previous estimates because of the Commonwealth’s failure to take action.  If the base waiting list number can be equated to the “principal”-we are not even paying our interest (growth).   The longer we wait, the greater the principal balance becomes.

• It should not be assumed that the average cost of a Waiver today is what it will be for someone once we have begun to aggressively address the urgent waiting list.     Average costs decrease when we start to move out of “crisis mode”.   This becomes even truer as we move into the non-urgent list.

• Other states have addressed their waiting list crisis; even with far more lenient eligibility criteria than VA (we have some of the strictest eligibility criteria in the country).  But the only way to do it is by taking on the institution reform.  There will be resistance to reforming the system to meet these needs and demands-no state has moved forward without it.  This is why Virginia remains behind the rest of the country-because we have ignored the issue.  You will hear some say its not doable. You will hear fear of the changes being proposed.   You will hear myths about moving to a community-based system.  Please remember-these are just that, MYTHS.  The facts and experiences around the country continuously dispute the myths.

o   Oregon can be taken as an example as a state that has addressed its community capacity needs by reforming its system.  Oregon has NO ICF/DD facilities in operation-and is serving almost three times the number of people with developmental disabilities per 100K than Virginia.

o   12 states around the country and DC (NH, VT, RI, AK, NM, WV, HI, ME, MN, IA, OR, MI) have closed ALL of their state operated institutions.

o   Others, like Georgia and Alabama, are well on their way!  Within the next year, Alabama will close its last institution, Partlow.  Georgia has scheduled the closures of its last three remaining facilities.

o   9 states (NV, MT, DE, WY, ID, CO, AZ, ND, SD) have less than 150 people living in their state operated institutions.   These states are not far away either. Meanwhile, Virginia has the tenth largest institutional census in the country

o   Virginia is one of only twelve states that have failed to close institutions.  .  6 of these 12 only have one facility in operation.  So our state is one of 6 states with multiple institutions and no closures to date.

Virginia is ranked 48^th in the country for its funding of small community-based residential services.  Part of this is the misdirection of dollars towards large state

o   operated institutions, but another HUGE part of this is the fact that people are simply NOT BEING SERVED.  The approach must be two fold.  Close the institutions (strengthening the community system) and providing help to the waiting list.

o   A state sponsored study of residents of SEVTC found that the support needs of these individuals were no greater than the support needs of people living in the community.  The same would therefore be true for the families who are waiting for Medicaid Waiver services.  Thousands of people are using these supports everyday—residents of Training Centers are not a “unique class” of people with ID.  They have the same support needs as many people currently living in the community!

• Improvements to community-based services cannot come at the expense of the waiting list.  It is unacceptable for Virginia to frame its actions as a “choice” of quality services vs. access to services.  It is time for Virginia to provide BOTH.  THIS is what the DOJ letter calls for!

• Addressing the Medicaid Waiver waiting list should not be an afterthought. IT SHOULD BE A PRIORITY. For more than two decades, family after family has testified at public hearings about the urgent need for help.  For too long-their outcry has been ignored.  It is time for change!

• In approaching transitions, Virginia cannot only focus on the group home model.  Not only is this out of step with national thinking, it ignores the preferences of the individual moving to the community.  Some people like roommates, some people like living alone.  Some people enjoy a bustling home filled with lots of activity; others prefer a quiet, relaxing retreat.  We cannot and should not do cookie cutter services.  Most of the country has turned its focus on more integrated community-based options, such as shared living, supported apartments or owning one’s own home.  If we make this move and then develop only group homes and ICFs for transitions-we will be back here in 10 years trying to undo what has been done.  Its time for Virginia to think ahead-we do so in other areas, why are we not planning thoughtfully when it comes to ID.DD Services??

CLOSING— Virginia cannot afford to ignore the waiting list.  THOUSANDS OF PEOPLE ARE IN CRISIS. PLEASE FUND 1,500 ADDITIONAL WAIVERS PER YEAR TO MEET URGENT NEED AND ELIMINATE RISK OF INSTITUIONALZIATION FOR THOSE WHO ARE WAITING.     Please invest in our future.  Please support Community for All!  NOW!

QUOTES FROM DOJ

Summary of DOJ Findings: We have concluded that the Commonwealth fails to provide services to individuals with intellectual and developmental disabilities in the most integrated setting appropriate to their needs in violation of the ADA.  The inadequacies we identified have resulted in the needless and prolonged institutionalization of, and other harms to, individuals with disabilities in CVTC and in other segregated training centers throughout the Commonwealth who could be served in the community.   Systematic failures causing this unnecessary institutionalization include:

o   The Commonwealth’s failure to develop sufficient quantity of community-based alternatives for individuals currently in CVTC and other training centers, particularly for individuals with complex needs.

o   The Commonwealth’s failure to use resources already available to expand community-based services and its misalignment of resources that prioritizes investment in institutions rather than in community-based services; and

o   A flawed discharge planning process at CVTC and other training centers that fails to meaningfully identify individuals’ needs and the services necessary to meet them and address barriers to discharge.

The Commonwealth also places individuals currently in the community at risk of unnecessary institutionalization at CVTC and other training centers, in violation of the ADA.  Systematic failures causing this violation include:

o   The Commonwealth’s failure to develop a sufficient quantity of community services to address the extremely long waiting list for community services, including the 3,000 people designated as “urgent” because their situation places them at serious risk of institutionalization; and

o   The Commonwealth’s failure to ensure a sufficient quantity of services, including crisis and respite services, to prevent the admission of individuals in the community to training centers when they experience crises.

Reliance on unnecessary and expensive institutional care both violates the civil rights of people with disabilities and insures unnecessary expense.  Community integration will permit the Commonwealth to support people with disabilities in settings appropriate to their needs in a more cost effective manner.

Excerpts from DOJ Recommended Remedial Measures:

o   “The Commonwealth must increase community capacity by allotting additional waivers and expanding community services to serve individuals in or at risk of entered the training centers.  A sufficient number waivers-far more than what the Commonwealth ahs currently budgeted- must be available to address both individuals confined to the training centers and those on the waitlist in the community. “

“As a means of preventing institutionalization, the Commonwealth should develop crisis services, preserve respite services it has been providing and provide integrated day services, including supported employment. The Commonwealth should move away from its reliance on sheltered workshops.

o   Virginia should make modifications to its Medicaid Waivers or explore the development of additional waivers to facilitate the development of integrated and individualized community services for people with complete physical, medical and behavioral needs.

o   The Commonwealth should ensure that its quality management systems are sufficient to reliably assess the adequacy and safety of treatment and services provided by community providers, the CSBs an CVTC.  The system must be able to timely detect deficiencies, verify implementation of prompt corrective action, identify areas warranting programmatic improvement and foster implementation of programmatic improvement.

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Public Notice

On behalf of Governor McDonnell, the Secretary of Health and Human Resources announces a Schedule of Regional Public Hearings on the Development of a Plan to Transition Individuals with Intellectual Disabilities from State Training Centers to Community-based Settings.

Section § 37.2-319 of the Code of Virginia requires the Governor to direct the Secretary of Health and Human Resources to develop a plan to transition individuals with intellectual disabilities from state training centers to community-based settings. The plan shall include provisions to reduce the number of individuals who are currently residing in state training centers and include provisions to:

(i)           offer a broad array of community-based services including but not limited to Intellectual Disability Home and Community Based Waivers, and

(ii)          address the availability of appropriate community housing.

The plan shall also include:

(i)           facility specific objectives,

(ii)          timeframes to implement changes, and

(iii)        shall be developed with input from:

a.    individuals receiving training center services and their families,

b.     community services boards,

c.    private providers, and

d.    the Department of Medical Assistance Services.

The Secretary shall submit the plan to the Governor and Chairmen of the House Committee on Appropriations and the Senate Committee on Finance by November 1, 2011.

Regional public hearings have been scheduled to receive input from citizens on what should be included in the plan. Those persons wishing to speak may register at each hearing site no earlier than one hour prior to the start of the hearing. Speakers will be taken in the order of registration. Each person may register only one speaker at a time. Speakers are asked to limit their comments to three minutes or less. Speakers representing groups and organizations should consolidate remarks to reduce duplication.

Shown below is the schedule of hearings. If you have any questions please do not hesitate to contact Heidi Dix, Department of Behavioral Health and Developmental Services Assistant Commissioner for Developmental Services at (804) 371-0064. Persons wishing to speak should sign up with the staff on-site on the day of the hearing, beginning one hour before the beginning of the hearing.

Persons unable to attend may comment in writing by August 15^th, 2011 either electronically or in hard copy to:

·        Electronically: heidi.dix@dbhds.virginia.gov

·        Hard Copy: Heidi Dix, Virginia Department of Behavioral Health and Developmental Services, 1220 Bank Street, Richmond, VA 23218-1727.

Public Notice

Accommodations for individuals with hearing impairment may be made by calling (804) 371-0064. All requests for individuals with hearing impairment must be received by 5:00 p.m., Monday, July 25^th.

All information listed above is available at this link:  http://www.dbhds.virginia.gov/ODS-default.htm

The History of Disability

May 6th, 2011

A new museum explores the way we have perceived and treated people with disabilities

There’s a new history museum in town, on the history of disabilities, mental and physical, and how we think about these realities, and help or don’t help the disabled and people in general deal with them. The Museum of DisABILITY History is at 3826 Main Street, in the old firehall, just past Bailey.

As ever with realities we don’t like to think about, the words keep changing. All the way back to the Greeks, whose word idiotes didn’t mean idiot but something more like private citizen in a society that put a premium on public service, then someone without a special skill or special knowledge, then simply ignorant.

The particularly denigrative meaning came later, in later languages, seemingly beginning around the early Renaissance. The museum exhibit points out that in pre-literate societies people with intellectual disabilities were not so noticeable. Intellectually disabled is the current term of art. Other terms along the way, since the Renaissance, have included feeble-minded, mentally defective, mentally retarded, and developmentally disabled. (The exhibit spares us the more cloying political correctness terminology. I may have missed it, but in the copious verbal material accompanying the exhibit objects and graphics, I didn’t see the word “challenged.”)

Modern ideas of treatment of mental and physical disabilities—with particular reference to how we do it now in the United States—got started with the French Enlightenment. In the 17th century there were “lunatic asylums” in France, in which therapy consisted basically of shackles and chains. In the late 18th century, several theorists and practitioners in the field came up with ideas about providing disabled individuals with purposeful activities. It was the beginning of modern psychological methods of care and treatment of the disabled.

A man named Edward Seguin, who trained in the newer ideas and methods being developed in France, came to the United States in 1850 and worked first in Boston with Dr. Samuel Gridley at his School for Idiotic and Feeble-Minded Youth, then joined Dr. Hervey Wilbur in setting up a series of schools/institutions for the New York State Commission on Idiocy to house and teach young people with intellectual disabilities, to enable them to return to their families and live productive lives in society. Dr. Wilbur’s hope and intention was to cure them, the exhibit points out, but continued custodial care became the norm.

Such institutions constituted the dominant mode of caring for and treatment of people with intellectual disabilities through most of the 20th century, until exposés of deplorable conditions in some state institutions (such as the notorious Willowbrook Developmental Center on Staten Island that Senator Robert Kennedy, after a tour of the place, described as a “snake pit”) led to a change in direction toward de-institutionalizing, and establishment of community residences for the disabled.

Posing the question about community responsibility for the care and treatment of the disabled in terms of communities, plural. (Buffalo has a lot of such residences for disabled of all sorts. I have a friend, a social worker, who was involved some years ago with an effort to establish a community home in Orchard Park for Down Syndrome people. There were public hearings, and opposition based on a spectrum of fears and apprehensions. Opposition that didn’t go away even after all the fears and apprehensions were addressed, it would have seemed, from any reasonable point of view. Finally, one man got up and said, “I don’t want to have to see those people.”)

The original question about community responsibility for care of the disabled is basically a fiscal one. Who does it, which comes down to who pays for care that is beyond the means, fiscal and otherwise, of the family of the disabled. Documents on display from colonial-era Massachusetts and Connecticut mandate that idiots and distracted persons not cared for by their families be cared for by the community. By the early 19th century, most communities had poorhouses or almshouses, largely populated by the disabled. These institutions morphed into the schools/institutions in use through the mid-20th century.

The question of costs and other considerations in the 20th century raises the edging-into-the-ugly matter of eugenics (which Hitler, for example, saw such potential for). A eugenics display touches on the ugly, but also on positive aspects such as UB professor and Children’s Hospital physician Dr. Robert Guthrie’s development of PKU and related fetal tests (raising further ethical considerations).

A section of the exhibit deals with special difficulties the black community encountered with respect to care and treatment of the disabled. Over the long span of years the “separate but equal” doctrine prevailed regarding public educational facilities in general, it applied also to educational and training facilities for the disabled. (Whereas, “separate but equal is inherently unequal” was and is a universal.)

Other sections are on supposed humor at the expense particularly of the intellectually disabled, on athletics and the disabled, and on assistive devices. The oldest depiction of an assistive device is in an illustration in an Egyptian tomb from 2830 BC of a man with what looks like a misshapen lower leg and foot using a crutch.

Also a section on a mobile educational program called Kids on the Block that uses muppet-like puppets to teach children about disability issues (and differences in general) in a comfortable and entertaining way. Presentations are made free of charge in schools and like venues.

The Museum of DisABILITY History is a project of People Inc. Tess Fraser is the museum director. Douglas Platt is the curator. And puppeteer extraordinaire Brie Kishel is project coordinator of the Kids on the Block program.

—jack foran

Read more: http://artvoice.com/issues/v10n18/art_scene/history_of_disability#SlideFrame_0#ixzz1LaSuxUCh

Justin Dart, A Champion For Freedom

April 6th, 2011

Justin Dart, Jr., was a leader in the international disability rights movement and a renowned human rights activist. He was widely recognized as the “father of the Americans with Disabilities Act” and the “godfather of the disability rights movement.”

Dart believed that everyone had the right to lead their life on their terms, and for over three decades he led the crusade to fight for the rights of people with disabilities. Dart was the recipient of five presidential appointments and numerous honors, including receiving the Presidential Medal of Freedom – the nation’s highest civilian award – from President Clinton.

Dart is most famous for his work in passing the American’s with Disability Act (ADA) and was one of the few who was on the Podium when President Bush signed it into law in 1990. The ADA was the first step to protecting people with disabilities from discrimination and ensuring everyone had the freedom of access to all public places and the right to work for the place of their choosing.

Dart was dedicated to his vision of a “revolution of empowerment.” Dart called for “a solidarity among all who love justice, all who love life, to create a revolution that will empower every single human being to govern his or her life.”

Justin Dart is a champion for Freedom: he played a critical role in passing the ADA, courageously challenged the government’s paternalistic beliefs, and tirelessly fought for the rights of people with disabilities. Dart embodies Freedom which is why he is our Freedom celebrity.

For more information on Justin Dart go to: http://www.disabilityhistory.org/people_dart.html,

http://www.abilitymagazine.com/JustinDart_remembered.html