| Volume 08 | Issue 29 | July 21, 2008 |
Welcome to Monday Morning in Washington, D.C., published weekly by The Arc of the United States. We will bring to you news of interest to self advocates and their families, volunteers, professionals, and supporters of the disability movement. Please send any comments to mmwdc@thearc.org. You are welcome to reproduce and distribute items from Monday Morning in Washington, D.C., but please credit Monday Morning in Washington, D.C. (The Arc of the United States, 2007).
The Arc of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with our network of members and affiliated chapters, we improve systems of supports and services; connect families; inspire communities; and influence public policy.
[NOTE: Having trouble reading this newsletter? Read it online.] [Past Issues]
NOEWAIT Newsletter and Brochure now available.
Newsletter and brochure for NOEWAIT (National Organization to End the Wait List) is available online through the NOEWAIT website http://www.noewait.net
STOMP- Specialized Training of Military Parents
STOMP is the only National Parent Training and Information Center for military families providing support and advice to military parents without regard of the type of medical condition their child has. http://www.stompproject.org/
National Forum on Disability Issues featuring The 2008 Presidential Candidates (invited)Webcast:
Please plan on joining us remotely if you can't come in person. Watch with your family, or set up a viewing party in your area and bring lots of folks together to watch as a group.
The National Forum on Disability Issues will feature a live, simultaneous webcast, complete with pass-through captioning and American Sign Language interpreting.
The webcast is made possible by disaboom.com To Register for the forum - http://www.disaboom.com/AAPDSignUp.aspx
[nectac-enotes]
NECTAC eNotes - July 18, 2008
Current and past issues of eNotes can be viewed online at http://www.nectac.org/enotes/enotes.asp
In this Issue
Parents and professionals are invited to “Renew. Refresh. Rejuvenate.” at the 24th annual International Conference on Young Children with Special Needs and Their Families. It will be Oct. 27 – 30 at the Hilton Minneapolis. Sponsored by the Division of Early Childhood of the Council of Exceptional Children, the event will present the latest research and practices in the field. A limited number of scholarships to cover registration fees is available to parents. Application deadline is Aug. 31. For scholarship information, contact Judy Swett at jswett@PACER.org or 952-838-9000. For conference information and registration, please visit www.dec-sped.org.
Autism Spectrum Symposium - Friday, October 10, 2008.
The George Washington University Office of Disability Support Services is hosting an Autism Spectrum Symposium on Friday, October 10, 2008. The program brochure and registration form are available on our website at http://gwired.gwu.edu/dss. Please spread the word!
SAVE THE DATE! The 2nd Annual Meeting of The Sibling Leadership
Network
November 6-7, 2008 Columbus, Ohio -
Marriott Airport Hotel
Connect with others who have a sibling with a disability--and share
your knowledge and experience!
With presentations, workshops, and breakouts by:
• Jeff and Cindy Daly (directors of the film Where's Molly)
• Dean Fadel (lobbyist extraordinaire)
• Tom Fish (OhioSIBS and OSU)
• Tamar Heller (University of Illinois, Chicago)
• Ann Kaiser (Vanderbilt)
• Katie Keiling (University of Illinois, Chicago)
• Stan Klein (member of Senator Barack Obama’s Disability Task
Force)
• John Kramer (University of Illinois, Chicago)
• Emily Marino (YAI)
• Don Meyer (The Sibling Support Project)
• Mike Wehmeyer (University of Kansas)
• and many others!
On topics including:
• Siblings and Self-Advocates Working Together for Policies that
Benefit Everyone;
• Creating Community-Based Adult Sibling Programs;
• Sibshops and Other Considerations for Young Brothers and
Sisters;
• Sibs’ Role in Self-Determination;
• Senator Barack Obama’s Disability Policy;
• Research on Sibling Concerns;
• For Better or Worse: Siblings’ Influence on Choosing A Mate;
• Influencing Legislators;
• Spreading the Word about Sibling Issues and the Work of the
Sibling Leadership Network!
Hosted by: The Nisonger Center at The Ohio State University, the
Rehabilitation Research and Training Center on Aging with
Developmental Disabilities, The Sibling Support Project, and the
Vanderbilt Kennedy Center for Excellence in Developmental Disabilities
More details available in late July on http://www.siblingsupport.org !
Mark your calendar!!
REFERENCE POINTS:
SSA finalizes changes to Ticket to Work program
The Social Security Administration is revising its regulations governing "The Ticket to Work and Self-Sufficiency Program," which encourages Social Security disability beneficiaries to return to work. "These rules outline a new and improved Ticket to Work program and are based on learning from our experiences, listening to input from interested parties, and responding to their suggestions," said Michael J. Astrue, Commissioner of Social Security. "Beneficiaries with disabilities will have greater flexibility and expanded choices in obtaining the services they need to attain their employment goals". Essentially, the changes add an educational and technical training option to supplement the work requirement for Ticket to Work eligibility, and would tighten up the progress requirements for continued participation in the program. The final regulations are effective July 21, 2008.
Details of the changes appear in the SSA's notice of proposed rulemaking and are published in the May 20, 2008, Federal Register (73 Fed. Reg. 29324). Source: http://hr.cch.com/news/uiss/070208a.asp From: The DBTAC-Great Lakes ADA Center, http://www.adagreatlakes.org
REFERENCE POINTS:
Conference and Workshop Updates Added to the TATRA Website
REFERENCE POINTS Conference and workshop updates feature NEW additions to the listing of transition related national and regional conferences maintained on PACER Center's TATRA Project web site. To see our complete calendar of events, please visit us at http://www.pacer.org/tatra/calendar.asp.
AARP's "A Balancing Act: State Long-Term Care Reform" report.
Information Bulletin #254 (7/08)
AARP recently issued an important report entitled "A Balancing Act: State
Long-Term Care Reform," examining "the extent to which states have
balanced the delivery of Medicaid-funded long-term services and supports
(LTSS) to people in their homes ... and in institutions." http://www.aarp.org/ppi
"Balancing" means "serving a greater number of people with long-term care
(LTC) needs in their homes or in more home-lie settings in their
communities than in nursing homes; and shifting more resources toward home
and community-based services to 'balance' Medicaid LTSS spending between
institutional services and HCBS."
Advocates for older and disabled Americans should read the entire report
and use it in their advocacy efforts. Let's not forget that the U.S.
Supreme Court in the Olmstead decision more than nine years ago told
states that they must affirmatively respond to persons' requests to reside
in the community instead of in nursing homes! To the extent your State has
not significantly balanced its Medicaid funds, it could be violating the
Olmstead mandate, the ADA and illegally discriminating against persons who
wish to reside in the community.
Here are some of AARP's findings:
"On average, Medicaid dollars can support nearly three older people and
adults with physical disabilities in home and community-based services
(HCBS) for every person in a nursing home. Thus, to the extent states
provide HCBS instead of nursing home services, this shift in service can
be both cost-effective and responsive to the preferences of people with
disabilities."
However, "seventy-five percent of Medicaid LTC spending for older people
and adults with physical disabilities paid for institutional services,
compared to only 39 percent for people with mental
retardation/developmental disability (MR/DD)."
"Finding: There is great variation among states, ranging from 5 percent or
less to more than 50 percent of Medicaid LTSS funds going toward HCBS for
older people and adults with disabilities." Where does your State place?
Finding: The "spending increase for MR/DD waiver programs was four times
as great as the spending increase for ICF/MR from 2001 to 2006. In
contrast, the spending increase for HCBS for older people and adults with
physical disabilities was roughly equivalent to the spending increase for
nursing homes over this period." How much increase did your State have?
Finding: "From 1999 to 2004, the number of HCBS participants increased in
43 states and declined in seven. In 27 states, the number of nursing home
participants increased over the same period, and the number declined in 23
states."
Finding: "Progress in balancing Medicaid spending varied greatly among
states. In 22 states, the dollar increase in Medicaid spending on HCBS
from FY 2001 to FY 2006 was greater than the dollar increase on nursing
home care. Another 27 states added more Medicaid funds to nursing home
services than to HCBS during these five years." Where is your State?
The AARP report asks "Why have some states made more progress than
others?" It lists 12 "success factors." However, the most important factor
is "Philosophy - The state's intention to deliver services to people with
disabilities in the most independent living situation and expand
cost-effective HCBS options guides all other decisions."
Has your state balanced is its long-term services and supports? Or is it
merely 'talking the talk' and not really committed to implement Olmstead?
The numbers and dollars give the answer. Get the report and see how your
state has done.
Steve Gold, The Disability Odyssey continues
Back issues of other Information Bulletins are available online at
http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects.
To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.
Scholarships for travel expenses are available. Invitations are currently be distributed to target audiences. Future trainings will be held in Chicago, IL, Seattle, WA, and New York, NY. Registration forms for these events will be posted a later date.
CMHS CONSUMER AFFAIRS E-NEWS JULY 10, 2008
New Guide on Self-Directed Mental Health Care
Self-directed care is a new approach to the delivery of community services
to people with mental illnesses. It allows consumers to manage their own
care and control a budget to pay for the services and supports.
The Bazelon Center and the UPENN Collaborative on Community Integration
which is funded by the National Institute on Disability and Rehabilitation
Research have produced a new guide entitled In the Driver's Seat: A Guide
to Self-Directed Mental Health Care. This 40-page document describes
self-
directed care, offers advocacy strategies and tactics to develop and
implement self-directed care approaches, and looks at how these
initiatives work and how they are funded. It also lists strategies by
states to support these services. Fact sheets and questions-and-answers
provide further information on financing, eligibility, evaluation,
planning, and support brokerage. The guide is at website http://www.upennrrtc.org/resources/view.php?tool_id=184.
FVND E-News Week of July 14th
HRSA REPORT STUDIES SAFETY NET HEALTH CENTERS
Health Centers: America’s Primary Care Safety Net describes the history of safety net health center programs; safety net health centers' role in providing a medical home; the model of care used, and how connections are sustained between primary care associations, offices, and other partners. The report, produced by the Health Resources and Services Administration’s Bureau of Primary Health Care, also discusses the unprecedented growth of the health center program during the period 2002-2007 and outlines issues related to the program's future in the following areas: work force, health information technology, emergency management, quality, and performance measurement. Program successes are discussed, as well. The report is available at http://ftp.hrsa.gov/bphc/HRSA_HealthCenterProgramReport.pdf
A new Child Trends study entitled Involvement among Resident Fathers and Links to Infant Cognitive Outcomes
by Jacinta Bronte-Tinkew, Jennifer Carrano, Allison Horowitz, and Akemi Kinukawa, finds that fathers' involvement in a variety of activities with their infant children is positively associated with infant cognitive development. The study also shows that benefits are greater for male infants and for infants with a disability. The study is based on data from the Early Childhood Longitudinal Study - Birth Cohort, a nationally representative survey of children born in 2001. For more information go to http://jfi.sagepub.com/cgi/content/abstract/0192513X08318145v1
America's Children in Brief: Key National Indicators of Well-Being, 2008
The Federal Interagency Forum on Child and Family Statistics has published its 2008 report on the well-being of children and families, entitled America's Children in Brief: Key National Indicators of Well-Being, 2008. The report provides data organized into the following seven sections: Family and Social Environment, Economic Circumstances, Health Care, Physical Environment and Safety, Behavior, Education, and Health. It is available online at http://www.childstats.gov/americaschildren/index.asp
Research and Training Center on Community Living
RISP report - Invaluable data for those interested in trends and expenditures
2007 annual residential and Medicaid services data have been posted on our website site http://rtc.umn.edu . The posting includes a note explaining the ICF/MR expenditure data are not yet available.
FamiliesUSA
Precarious Position: States Must Balance Declining Revenues with a Growing Need for Medicaid
Several states are proposing to balance their budgets by cutting Medicaid—raising cost-sharing, shrinking eligibility, or reducing benefits. This issue brief discusses Medicaid cuts in a number of states and recommends congressional action to bring fiscal relief to the states. (July 2008) http://www.familiesusa.org/
Statehealthfacts.org
Disability and Physical Activity
Updated data from the CDC’s 2007 Behavioral Risk Factor Surveillance System (BRFSS) on the average number of days with limited activity per month among adults and the percent of adults who participate in moderate or vigorous physical activity per month are now available for all states and the nation. http://www.statehealthfacts.org/comparemaptable.jsp?ind=120&cat=2
New Products added to the Quality Mall
The following new products have been published on the Quality Mall web site:"Residential Services for Persons with Developmental Disabilities: Status and Trends (RISP)" - http://www.qualitymall.org/products/prod1.asp?prodid=895
One-Stop Toolkit Resources of the Week Technical Assistance Project
Business $ense -- America's Business: The Power to Transform
U.S. Department of Labor Office of Disability Employment Policy
A new communication initiative with America’s small businesses
On June 3 and 4, 2008, hundreds of leaders from business, government, and non-profit organizations convened in Washington, D.C., to discuss how today’s global marketplace has the power to open doors to employment for people with disabilities. One message resonated loud and clear—hiring people with disabilities is good for business.
Employees with disabilities have proven they have a positive impact on businesses' bottom line. They adapt to different situations and circumstances. They add to the range of viewpoints businesses need to succeed, offering fresh ideas on how to solve problems, accomplish tasks, and implement strategies.
To learn more about the disability dividend, read Diverse Perspectives: People with Disabilities Fulfilling Your Business Goals (http://www.dol.gov/odep/pubs/fact/diverse.htm) one of several publications available from the ODEP website. Also, visit the Disability Employment Policy Summit Web site (http://www.odepsummit.org/).
U.S. BLN Annual Conference--Expanding Inclusion: The Business Strategy
Portland, Oregon - October 5-8, 2008
http://www.newworkforceconference.org/
The US Business Leadership Network’s 11th Annual Conference and National Career Fair will be held at the Portland Marriott Downtown Waterfront Hotel, which is known for stunning views of Mt. Hood and the Willamette River paired with their award winning service.
The 2008 conference, “Expanding Inclusion: The Business Strategy” is the preeminent national event for business, community leaders and BLN chapters that have an interest in hiring, retention and marketing to people with disabilities. This year’s event promises to provide informational and educational opportunities of the highest quality.
Start-Up USA Self-Employment Fact Sheet: Medicaid Home and Community Based Services
http://www.start-up-usa.biz/resources/content.cfm?id=651
Medicaid is a state-federal program that provides health care to eligible low income individuals. When states participate in Medicaid, the state contributes part of the funding, and the federal government contributes part. The federal government provides guidelines for the program, but each state establishes its own requirements. In addition, states can elect to provide “optional” services. The specific services that are available and whether a person with a disability is eligible for these services is state specific and will vary depending on where an individual lives in the U.S.
Medicaid Waivers may be one of the tools that individuals with disabilities can use to support self-employment. While not every individual with a disability will be able to use a Waiver for self-employment, those individuals who are already receiving services, or who are eligible to become Waiver participants should explore the possibility in their states. This Q and A provides an overview and examples of how individuals with disabilities have used Medicaid Waivers to support self-employment
Web-Based Resources for Employment Services Professionals at MassWorks.org
http://massworks.org/
MassWorks.org is an online resource for those looking to improve community employment experiences for individuals with disabilities. Developed for the Massachusetts Medicaid Infrastructure Comprehensive Employment Opportunities Grant by the Institute for Community Inclusion, this website features frequently changing topics ranging from job coaching to financial work incentives.
At MassWorks.org, employment support professionals, job seekers and educators can download simple and effective templates, checklists and guides that give structure and purpose to providing employment supports. An interactive feature, the MassWorks blog, gives users a forum to comment on articles written about a variety of employment issues. Subscriptions to this site are free, and include electronic updates when new content is added.
The site is designed for professionals who provide employment services and supports for individuals with disabilities.Experiences of State Vocational Rehabilitation agencies with the Ticket to Work program
RRTC on Workplace Supports
Journal of Vocational Rehabilitation 27 (2007) 107–116 107
IOS Press
http://www.worksupport.com/research/viewContent.cfm/643
This article describes the experience of State Vocational Rehabilitation Agencies (SVRAs) with the Ticket to Work (TTW) program. We examined administrative data from the Social Security Administration and the Rehabilitation Services Administration and conducted site visits and telephone interviews with SVRA officials in 25 states as part of a five-year evaluation of the TTW program.
The recession of 2001–2002, along with recent financial constraints due to increased service demand and shrinking state budgets, has negatively affected TTW implementation. SVRAs have spent significant time and energy implementing TTW, particularly assigning Tickets with little apparent benefit to its clients, according to SVRA officials. They also expressed concerns about conflicts between the necessity to obtain Ticket assignments from new and existing clients to receive SSA payments under the traditional cost reimbursement system and the requirements to provide maximum consumer choice under the Rehabilitation Act. New draft regulations rescind this requirement and it remains to be seen what the future role of SVRAs in the Ticket program will be.
hcbs.org
Clearinghouse CLIPS: July 17, 2008
Alzheimer’s Disease Demonstration Grants to States (ADDGS) Projects – AoA Demonstration Grants
Topic(s): Aging Issues, Long-Term Care, State/Agency Information
Source: Administration on Aging
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2304
A Balancing Act: State Long-Term Care Reform
Summary: This paper examines the extent to which states have balanced the delivery of Medicaid-funded LTC services and supports to people in their homes and in institutions. What is unique about this report is its primary focus on older people and adults with physical disabilities separate from other LTC populations, such as people with developmental disabilities. Explore what has been accomplished under current Medicaid law and review how federal policies impact the ability to balance service delivery.
Topic(s): Aging Issues, Long-Term Care, Money Follows the Person, Physical Disabilities
Source: AARP Public Policy Institute
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2306
Amendment to the Ticket To Work and Self-Sufficiency Program; Final Rule
Summary: These are the final rules on the Ticket to Work and Self-Sufficiency Program published May, 2008 by the Social Security Administration. The changes were authorized by the Ticket to Work and Work Incentives Improvement Act of 1999. The rules affect the areas of eligibility, funding for employment networks, and reimbursement allocation and sharing between employment networks and state vocational rehabilitation agencies, among others.
Topic(s): Employment, Financing HCBS
Source: Federal Register
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2293
EPA Aging Initiative Environmental Health Fact Sheets
Summary: These short documents provide information on common health concerns for elderly people that can be caused or exacerbated by environmental factors. Elderly people, caretakers, and educators can use these resources to identify and prevent potential health threats. The fact sheets are available here in English and Spanish. They are available in 13 additional languages as well as large print and easy to read formats on the EPA website provided.
Topic(s): Aging Issues, Long-Term Care
Source: Environmental Protection Agency; EPA
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2294
Federal Disability Programs: Coordination Could Facilitate Better Data Collection to Assess the Status of People with Disabilities
Summary: While some health and economic data on people with disabilities are currently available, these data have limited use in providing a comprehensive assessment of how these individuals are faring. Additionally, the lack of more useful data limits the federal government’s ability to determine how well federal programs are serving individuals with disabilities. Read about ways better coordination could help facilitate the collection of such data to inform policy decisions.
Topic(s): Developmental/Psychiatric Disabilities
Source: Government Accountability Office/GAO
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2299
State Promising Practices Related to Medicaid Exception Trusts
Summary: Medicaid exception trusts are generally exempt under federal law from the usual rules of counting trust income and resources. A Special Needs Trust (SNT) is a type of exception trust established by certain third parties for the benefit of a disabled individual under age 65. This report highlights examples of state laws, forms, eligibility rules, and operating practices states use to properly administer the statutory SNT provision and make recoveries.
Topic(s): Developmental/Psychiatric Disabilities, Long-Term Care, Physical Disabilities
Source: Thomson Reuters (formerly Medstat)
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2298
State Strategies for Determining Eligibility and Level of Care for ICF/MR and Waiver Program Participants
Summary: This report presents the results of a survey of state developmental disabilities agency officials regarding the determination of initial eligibility/level of care and the “annual level of care” for services furnished under Medicaid waiver and ICF/MR programs. Forty-seven (92%) states provided information on state waiver eligibility criteria and practices. The report describes state level of care assessment approaches and provides legislative cites and contact information for state staff.
Topic(s): Developmental/Psychiatric Disabilities, Long-Term Care, Physical Disabilities
Source: Rutgers/NASHP
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2305
Succeeding in College and at Work: Students with Disabilities Tell Their Stories
Summary: Watch Danielle, Alexander, Valeska, and Santara share strategies they used as students with disabilities to successfully graduate from college and get jobs. They discuss their struggles with self-reporting their physical or mental disabilities and negotiating accommodations in school and at work. DVDs are available upon request.
Topic(s): Accessibility, Employment, Mental Health, Physical Disabilities, Transition/Diversion from Institutions, Workforce
Source: New England ADA Center
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2295
Transitioning Youth with Mental Health Needs to Meaningful Employment and Independent Living
Summary: The authors offer recommendations for providing successful career preparation support to youth with mental health needs. They studied five successful programs to identify common design features that address frequently identified challenges in transitioning to an independent adulthood. They also offer analysis of systems level factors affecting program design and sustainability, in addition to recommendations for staff and policymakers.
Topic(s): Children and Family Services, Consumer Direction, Developmental/Psychiatric Disabilities, Employment, Housing, Mental Health, Sustainability
Source: National Collaborative on Workforce and Disability for Youth
More Info: http://www.hcbs.org/moreInfo.php/nb/doc/2297
The Association of State and Territorial Health Officials (ASTHO) issued "At-risk populations and influenza pandemic: Planning Guidance for State, Territorial, Tribal and Local Health Departments." This 126-page document has links to a variety of resources offering guidance including how to partner with "at-risk" populations and providers, identifying at-risk populations in the community, and involving people with varying abilities in preparedness planning and data. Among other topics, it also covers continuity of operations plans during a pandemic, home care during a pandemic, evaluation of preparedness, and mapping populations in a community. See the document at: www.astho.org/pubs/ASTHO_ARPP_Guidance_June3008.pdf
If you have any questions, feel free to contact Annie Acosta at acosta@thedpc.org , Director of Communications and Grassroots Advocacy Disability Policy Collaboration
Mayor’s Academy on Asset Development for Persons with Disabilities
The National Disability Institute and its partner IRS SPEC will hold its third annual Mayor’s Academy on Asset Development for Persons with Disabilities on September 17 and 18, 2008 in San Antonio, TX. Participants from over 40 US cities taking part in the Real Economic Impact Tour will gather to expand its peer support system and build capacity and outreach to taxpayers with disabilities.
For more information contact Judy Stengel, REI Tour Resource Manager, National Disability Institute, 316.619.2776,jstengel@ndi-inc.org
Until Next week
The Arc of the United States,1010 Wayne Avenue, Ste. 650,Silver Spring, MD 20910, Phone: 301-565-3842, Fax: 301-565-3843, Email: mmwdc@info.thearc.org, Web: www.thearc.org
Disclaimer: MMWDC publishes information about issues and events that we believe to be important and likely to be of interest to advocates and others interested in inclusion of persons with disabilities in all parts of society. However, MMWDC and The Arc of the United States and TheArcLink Incorporated do not necessarily endorse all events, sponsoring organizations and reports which appear.