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November 25, 2014

States Ranked On Court Accessibility - DisabiltyScoop
A new ranking finds that access to the courts for people with disabilities varies significantly from one state to the next.

Teens Get Community Service In Ice Bucket Case - DisabiltyScoop
Three teens who dumped urine, tobacco and spit on a 15-year-old with autism who thought he was participating in the "ice bucket challenge" have been ordered to do community service.

Disney Facing More ADA Suits - DisabiltyScoop
A battle over disability access at Disney theme parks has been renewed, with more than two dozen separate claims filed against the entertainment company.

10 new "SWIFT in 60" Mini-films Showing Inclusive Educational Practices (IOD NH UCEDD) - AUCD
IOD Filmmaker Dan Habib just completed 10 mini-films for the SWIFT Center that show what inclusive school transformation looks like in five trailblazing schools across the country.

Position Opening: Assistant Virtual Trainee - AUCD
AUCD is recruiting for a new position: Assistant Virtual Trainee. With AUCD member programs in every US state and territory as well as internationally, our trainees exist all across the world, and more support is needed! The Assistant Virtual Trainee will assist the current Virtual Trainee to continue to build a virtual network among these trainees at AUCD member programs. The Assistant Virtual Trainee will also be mentored by the Virtual Trainee to help them learn more about the AUCD Network, national issues, and trainee network. Deadline: December 19
November 24, 2014

AUCD 2014 Awards Presented to Outstanding Individuals - AUCD
18 awards were presented to network members and friends at the 2014 AUCD Conference. AUCD is incredibly proud to recognize those who have made exceptional contributions to the lives of people with disabilities and their families.

USAID Gives $2.2 Million to UCP Wheels for Humanity - UPC
UCP Wheels for Humanity (UCP Wheels), a subsidiary of United Cerebral Palsy of Los Angeles, Ventura & Santa Barbara Counties, has received a $2.2 million grant from the United States Agency for International Development (USAID) and JSI Research & Training Institute to support …
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New Mexico To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 15

November 24, 2014

New Mexicohas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The goal of the new requirements, according to the New Mexico Human Services Department (HSD) "is to serve an eligible recipient in his or her community as an alternative to him or her being institutionalized."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 15. Further information is available at the HSD websiteHERE.

To comment on the proposal, send written comments to Cecilia Salazar, Human Services Department, Medical Assistance Division, Program Policy & Integrity Bureau, P.O. Box 2348, Santa Fe, New Mexico 87504. Emails may be directed to: Cecelia.Salazar@state.nm.us

Recorded messages may be left at (505) 827-7743 or toll free at (888) 997-2583, asking for extension 7-7743.

A public hearing on the proposal is scheduled to be held at the Toney Anaya Building, in the Rio Grande Room, in Santa Feon December 15 at11 a.m.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.New Mexicohas proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

New Mexicois now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Kansas To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 10

November 24, 2014

Kansas has proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The Kansas Department of Aging and Disability Services (KDADS) has proposed a series of changes to comply with the new directive and has set a December 10 deadline for public comments.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 10. Further information is available at the KDADS websiteHERE.

To submit comments:

  • By Phone: 785-296-4986 or 785-296-3473
  • By Email: HCBS-KS@kdads.ks.gov – Subject: HCBS Renewals Public Comments
  • By Mail: KDADS, Attn: HCBS Programs, 503 S. Kansas Ave, Topeka, KS 66603
  • By Fax: 785-296-0256, Attn: HCBS Programs

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid. Kansas has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Kansas is now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Alabama To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 5

November 24, 2014

Alabamahas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The goal of the new requirements, according to theAlabama Department of Mental Health, is to focus on the quality of anindividual's experiences; maximize access to community living and the opportunity to receive services in the most integrated setting; and to set quality standards for home- and community-based settings.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 5. Further information is available at the Alabama Department of Mental HealthHERE.

To submit written comments, send them by email to Daphne D. Rosalis at:daphne.rosalis@mh.alabama.gov

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Alabama has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Alabamais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Goodwill Industries of the Chesapeake, Inc. to hold 59th Annual Thanksgiving Dinner & Resource Fair - PRNewswire

BALTIMORE, Nov. 24, 2014 /PRNewswire-USNewswire/ -- Goodwill Industries of the Chesapeake will hold its 59th Annual Thanksgiving Dinner and Resource Fair on Wednesday, November 26, 2014 from 11:45 a.m. until 2:45 p.m. at The Baltimore Convention Center. This year over 300 volunteers from...



MV-1 Successfully Achieves Compliance With Latest Federal Safety and Crash Test Requirements - PRNewswire
SOUTH BEND, Ind., Nov. 24, 2014 /PRNewswire/ -- Mobility Ventures LLC, designer and manufacturer of the MV-1 -- the only American-made vehicle that is purpose-built with the wheelchair user in mind -- has successfully completed an updated series of crash tests on the MV-1 that are...

Senate Unlikely To Reconsider UN Disability Treaty - DisabiltyScoop
There is not enough support in the U.S. Senate to warrant another vote on ratification of an international disability rights treaty, according to one of the measure's chief backers.
November 21, 2014

Claims Deadline Approaches in Historic Class Action Settlements - PRNewswire

TORONTO, Nov. 21, 2014 /CNW/ - On November 30th, the claims deadline will expire in the precedent setting class action settlements concerning the Huronia, Rideau and Southwestern Regional Centres. These three class actions settled for $67.7 million in 2013, the largest settlement in...



Drs. Goudie and Marshall named Chief Medical Officers for Toronto 2015 Parapan American Games and Rio 2016 Paralympic Games - PRNewswire

OTTAWA, Nov. 21, 2014 /CNW/ - The Canadian Paralympic Committee is pleased to announce the appointments of Dr. Richard Goudie (Barrie, Ont.) as Chief Medical Officer and Dr. Andrew Marshall (Ottawa, Ont.) as Assistant Chief Medical Officer for Team Canada at the Toronto 2015 Parapan...



Future Uncertain For National Children's Study - DisabiltyScoop
An effort to track the health of 100,000 kids from birth to adulthood may stop before its official start in a potential setback for those looking for answers on autism and other disorders.

Lorri Unumb Honored by Professional Women in Advocacy - Autism Speaks - Advocasy
November 21, 2014

WASHINGTON, DC -- Lorri Unumb, Autism Speaks' vice president for state government affairs, was honored for Excellence in a State Issue Campaignat the annual Professional Women in Advocacy conference held here. National Grassroots Advocacy Director Shelley Hendrix was one of three finalists forExcellence In A Campaign For WomenServing Women.

Over 180 women were nominated in five categories for the annual awards which included finalists from organizations such as AARP, Google, the American Bar Association, the National Association of Manufacturers, the ASPCA, MADD and other groups. Autism Speaks captured three of the nominations, with Shelley Hendrix nominated in two categories.

Lorri Unumb, an attorney based in Lexington, SC, led the fight for Ryan's Law, named after her son with autism, in 2006 in South Carolina to require coverage of autism therapies by private insurers. She later joined Autism Speaks and has helped manage similar successful campaigns in 34 other states.

She has broadened her work to advocate with employers who self-fund their health plans to voluntarily add autism coverage. Approximatelyone-third of self-funded employers now voluntarily provide autism coverage, often acting after their home states enacts lawsrequiring coverage by fully funded health plans.

Hendrix was a finalist for the Excellence in a Campaign For Women Serving Women, "an effort wherein women advocate(s) successfully impacted the outcome of a problem or opportunity on behalf of other women."Hendrix has built and mobilized Autism Speaks' grassroots "army" of advocatesthat has played a prominent role in the enactment of state autism reform laws and which turned the tide in Congress in 2011 when the Combating Autism Act was reauthorized.

PWIA provides professional development and leadership training to women in all areas of advocacy, including federal, state and local government relations, public affairs, community relations, public policy, legislation, Congressional relations, community activism, political engagement and campaigns.


#AUCD2014: Please take a moment to complete the 2014 conference survey - AUCD
Thank you all for an amazing and energizing AUCD 2014 Conference! If you haven't already, please take a moment to complete the 2014 conference survey and tell us what you loved, what you could do without, and how we can continue to improve and build on this year's conference.

NCD Releases Annual Progress Report on National Disability Policy - AUCD
The National Council on Disability (NCD) has released the 2014 edition of National Disability Policy: A Progress Report. The 2014 Progress Report focuses on seven key areas: the Convention on the Rights of People with Disabilities (CRPD), employment access and inclusion, subminimum wage, education outcomes, Medicaid managed care, mental health care, and data trends in disability policy. The report provides policy recommendations in each area with the goal of promoting a more inclusive environment.
November 20, 2014

Deaf And Hard Of Hearing Advocates And Theatre Owners To Hold Joint Press Conference Regarding Proposed Rulemaking On Movie Theater Captioning - PRNewswire
WASHINGTON, Nov. 20, 2014 /PRNewswire-USNewswire/ -- The following is being released by National Association of Theatre Owners: WHEN:  21 November 2014, 10:00 A.M. Eastern WHERE:  The National Press...

ReadSpeaker Launches New Version of ReadSpeaker TextAid - PRNewswire
UPPSALA, Sweden, November 20, 2014 /PRNewswire/ -- ReadSpeaker is excited to announce the latest version of ReadSpeaker TextAid, with a fully redesigned user interface and an updated list of user-friendly features. The user interface - available in four languages with more to come - has...

Seinfeld Now Says He Doesn't Have Autism - DisabiltyScoop
Comedian Jerry Seinfeld is backing off comments he made earlier this month suggesting that he may be on the autism spectrum.

ReadSpeaker startet neue Version von ReadSpeaker TextAid - PRNewswire
UPPSALA, Schweden, November 20, 2014 /PRNewswire/ -- Der persönliche Online-Reader für Schüler und Studierende umfasst jetzt neue Text- und Dokumentenbibliotheksfunktionen.  ReadSpeaker freut sich, die neueste Version von ReadSpeaker TextAid mit vollständig neu...

ReadSpeaker lanserar ny version av ReadSpeaker TextAid - PRNewswire
UPPSALA, Sverige, November 20, 2014 /PRNewswire/ -- I den internetbaserade personliga läsaren för studenter ingår nu nya biblioteksfunktioner för texter och dokument.  ReadSpeaker har glädjen att presentera den senaste versionen av ReadSpeaker TextAid med...

ReadSpeaker lanceert nieuwe versie van ReadSpeaker TextAid - PRNewswire
UPPSALA, Zweden, November 20, 2014 /PRNewswire/ -- De online personal reader voor studenten bevat nu nieuwe tekst- en documentbibliotheekmogelijkheden.  ReadSpeaker is verheugd om de nieuwste versie van ReadSpeaker TextAid aan te kondigen met een volledig vernieuwde...

Vote Planned On Tax-Free Disability Savings Accounts - DisabiltyScoop
With little time to spare, a vote will happen this year on a bill that would allow people with disabilities to save money without jeopardizing their benefits, a key member of Congress says.
November 19, 2014

HelpMeSee Welcomes Matt Kupec As Vice President Of Development And Marketing - PRNewswire

NEW YORK, Nov. 19, 2014 /PRNewswire-USNewswire/ -- HelpMeSee, a global campaign to eliminate blindness caused by treatable cataract, announces that Matt Kupec has been appointed Vice President of Development and Marketing.  Kupec, a veteran fundraiser, comes to HelpMeSee...



Special Olympics Narrows Health Gap Faced by People with Intellectual Disabilities - PRNewswire

WASHINGTON, Nov. 19, 2014 /PRNewswire-USNewswire/ -- Special Olympics released data today outlining the results of its successful two-year old Healthy Communities initiative and announced that it will expand the program from 14 to 100 sites by 2025. Healthy Communities provides...



Integral Senior Living Encourages Families to Take Stock of Aging Loved Ones During Holiday Visits - PRNewswire

CARLSBAD, Calif., Nov. 19, 2014 /PRNewswire/ -- Integral Senior Living (ISL), a senior residence management company, encourages families, during holiday visits with aging loved ones, to check on their health, discuss their senior care and review their important documents. Reuniting at the...



Otologic Pharmaceutics (OPI) Initiates Phase 1 Clinical Study of HNPN-1010 for Hearing Disorders - PRNewswire

OKLAHOMA CITY, Nov. 19, 2014 /PRNewswire/ -- Otologic Pharmaceutics, Inc. (OPI) announced today the initiation of clinical testing of NHPN-1010, its lead product candidate for the treatment of acute sensorineural hearing loss. OPI is a development-stage biopharmaceutical company committed...



Easter Seals Expands Mentorship Program for Young Women with Disabilities to Digital Audiences - PRNewswire

CHICAGO, Nov. 19, 2014 /PRNewswire-USNewswire/ -- Easter Seals is bringing young women with disabilities together through the national expansion of the Thrive program.  Women across the country will now have digital access to the Massachusetts-based program, Easter Seals...



Toymaker Wants Playtime To Be More Inclusive - DisabiltyScoop
The maker of childhood classics like Mr. Potato Head, Play-Doh and Connect 4 is looking to ensure that kids with developmental disabilities know how to engage with its toys too.

Possibility unbound: 25 years of progress for those with disability - CSMonitor.com - AUCD
Thanks to the Americans with Disabilities act - which turns 25 next year - and a demanding and aging baby boom generation, the nation has fewer limits for those with physical impairments.

Kentucky To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 5

November 19, 2014

Kentuckyhas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The goal of the new requirements, according to theKentucky Department of Human Services, "is to facilitate the integration and access of waiver participants into the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, to the same degree as individuals not receiving Medicaid HCBS."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 5.Further information is available at the Kentucky Departmentfor Medicaid Services HERE.

To submit written comments, send them by email to CMSfinalHCBRule@ky.gov, or by post mail to:
Department for Medicaid Services
HCB Final Rule Statewide Transition Plan
Commissioners Office
275 E. Main Street, 6W-A
Frankfort, Kentucky 40621

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Kentucky has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Kentuckyis now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

LALA Volverá a Donar a TeletónUSA por Transmisión Televisiva en Vivo - PRNewswire
DALLAS, 18 de noviembre del 2014 /PRNewswire-HISPANIC PR WIRE/ -- LALA, una de las principales empresas de productos lácteos en Estados Unidos y Latino América, hará entrega de una donación a TeletónUSA durante su transmisión en vivo el 12 y 13 de...
November 18, 2014

LALA to Donate Again to TeletonUSA During Live Broadcast - PRNewswire
DALLAS, Nov. 18, 2014 /PRNewswire/ -- LALA, one of the largest dairy products companies in the US and Latin America, will present a check to TeletonUSA during their live fundraising telecast to air December 12 and 13 on Spanish-language television station Univision. LALA and...

Juventas Therapeutics Presents Phase II Data at AHA Scientific Sessions That Shows JVS-100 is Safe, Potentially Effective in Patients with Critical Limb Ischemia - PRNewswire

CLEVELAND, Nov. 18, 2014 /PRNewswire-USNewswire/ -- Juventas Therapeutics Inc., a privately-held, clinical-stage company developing novel therapies for treatment of cardiovascular disease, had clinical data presented at the American Heart Association Scientific Sessions 2014 that show...



Clock Ticking On Plan For Disability Savings Accounts - DisabiltyScoop
Advocates are pushing Congress to act before the end of the year on a bill that would allow people with disabilities to save money without jeopardizing their government benefits.

Pope Looks To Destigmatize Autism - DisabiltyScoop
For the first time, Pope Francis is set to meet with individuals with autism and their families during an international conference on the developmental disorder.

Duct-Taped Teen Receives Apology - DisabiltyScoop
More than a month after a teen with autism was duct-taped to a goalpost and abandoned, those involved in the incident have apologized.
Last updated : November 25, 2014 - 21:22:24
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