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December 17, 2014

Tax-Free Disability Savings Bill Headed To Obama - DisabiltyScoop
The U.S. Senate has voted overwhelmingly to send legislation to the president establishing a new way for people with disabilities to save money without risking their government benefits.
December 16, 2014

10 Ways to Support Families of Children with Autism this Holiday Season - PRNewswire

BOSTON, Dec. 16, 2014 /PRNewswire-USNewswire/ -- For many of us, the holiday season is a wonderful time of the year – a time to get together with friends and family, enjoy favorite foods, decorate our homes, and exchange gifts. But it can also be a stressful season when you...



Disability Champion Leaving Congress - DisabiltyScoop
After 40 years on Capitol Hill, a U.S. senator who shaped the Americans with Disabilities Act is leaving his post.

New Prenatal Tests Called Into Question - DisabiltyScoop
Companies hawking new prenatal tests to detect Down syndrome and other chromosomal abnormalities may be promising more than they can deliver, an investigation finds.

Down Syndrome No Barrier To College Degree - DisabiltyScoop
Stereotypes and academic hurdles haven't stopped one man with Down syndrome from receiving his bachelor's degree, graduating magna cum laude.

Reps. Frankel, Deutch Cheer On ABLE At Autism Speaks' Florida Office - Autism Speaks - Advocasy

Meet with parents of children with autism

December 16, 2014

WEST PALM BEACH, FL -- Meeting with parents of children with autism at the Autism Speaks office here, U.S. Representatives Lois Frankel (FL-22) and Ted Deutch(FL-21) spoke of the benefits that could come with final Congressional approval of theAchieving a Better Life Experience Act (ABLE) Act. Their Florida colleague, Rep. Ander Crenshaw (FL-4), is the original sponsor of the bill which passed the House 404-17 last week.

Awaiting final approval in the Senate after eight years before Congress,the bipartisan bill has been called themost significant disabilities legislation since the1990 Americans with Disabilities Act.

"Families caring for a child with a disability worry about their child's long term security,” saidFrankel. “The ABLE Act allows parents to provide a cushion of support for their beloved son or daughter as they enter into adulthood."

Deutch said, “Parents of children with autism, Down syndrome, and other types of disabilities face unique financial challenges when it comes to planning for their long-term care expenses,” saidDeutch. "The ABLE Act is a commonsense solution that will help improve the financial security of millions of families by allowing them to save money in tax-free accounts and better plan for their disabled children's needs.”

Frankel and Deutch cosponsored the ABLE Act which would allow individuals with disabilities, or their families to save tax-free for their longterm disability expenses.


NC Mom Lectures Politically Opposed Sons: Agree On Autism - Autism Speaks - Advocasy

One a Democrat, the other a Republican get surprise call on TV

December 16, 2014

Political pundits Dallas and Brad Woodhouse who argue from opposite sides of the political spectrum were told yesterday to meet in the middle when it comes to autism. The order came from their mother Joy in a viewerphone call as the two weretalking politicson C-SPAN's Washington Journal.

"Oh god, it's mom," said Dallas Woodhouse, the Republican, as their motherrelated their bickering over Thanksgiving and pleaded fora "peaceful Christmas."

Asked by the moderator where she landed on the political spectrum, Joy Woodhouse said said she was a "one-issue person" driven by concern for her grandson with autism.

Watch the clip here:


NC Mom Lectures Politically Opposed Sons: Agree On Autism - Autism Speaks - Advocasy

One a Democrat, the other a Republican get surprise call on TV

December 16, 2014

Political pundits Dallas and Brad Woodhouse who argue from opposite sides of the political spectrum were told yesterday to meet in the middle when it comes to autism. The order came from their mother Joy in a viewerphone call as the two weretalking politicson C-SPAN's Washington Journal.

"Oh god, it's mom," said Dallas Woodhouse, the Republican, as their motherrelated their bickering over Thanksgiving and pleaded fora "peaceful Christmas."

Asked by the moderator where she landed on the political spectrum, Joy Woodhouse said said she was a "one-issue person" driven by concern for her grandson with autism.

Watch the clip here:


'60 Minutes' Spotlights Insurance Denials For Mental Health - Autism Speaks - Advocasy

California fights back through legal action, regulation

December 16, 2014

California Insurance Commissioner Dave Jones has commended CBS "60 Minutes" for highlighting the difficulties individualsexperience in securing longterm mental health coverage and highlighted his agency's efforts to improve benfits, particularly for the treatment of autism.

The CBS segment, entitled "Denied," [view below] aired December 14 and focused onclaims processed byAnthem. CBS found that 90 to 100 percent of claims reviews were denied by Anthem's contracted physicians.

"60 Minutes highlights Anthem Blue Cross' history of denying coverage for vital mental health treatment despite mental health parity laws, but they are not the only insurer that has denied coverage for lifesaving care to those who suffer from mental illness," said Jones. "If a patient is denied medically necessary care, such as residential care for an eating disorder or behavioral health treatment for autism, the Department of Insurance is here to help the policyholder get the coverage they are entitled to under the law. This 60 Minutes feature puts a national spotlight on the all too common practice of denying people with severe mental illness the medical care to which they are entitled."

In April, Jones' agency issued strict guidelines on the behavioral health treatment for autism, such as applied behavioral analysis (ABA),that insurers must cover.Prior to the new regulations, it was not uncommon for health insurers to delay or deny medically necessary treatment for individuals with autism.

"The mental health parity regulations will help end improper insurer delays and denials of medically necessary treatments for people with autism," saidJones. "This regulation provides clear guidance to the industry, stakeholders and consumers on the requirements of the Mental Health Parity Act."

Autism Speaks honoredJones as its2014 Executive Champion for his strong advocacy on behalf of families with autism during the 9th Annual Autism Law Summit.

As a result of a string of class action lawsuits brought in Washington state, coverage for autism has now been required by regulation by all state-regulated health plans. The litigation was all based on alleged violations of state and federal mental health parity law.


Intronix Technologies to Collaborate with Western University to Develop New Rehabilitation Technologies for Musculoskeletal Disorders - PRNewswire

TORONTO, Dec. 16, 2014 /PRNewswire/ -- Intronix Technologies will be collaborating with Western University's Department of Electrical and Computer Engineering to develop technology to be incorporated into rehabilitation devices. Canadian-based innovator Intronix Technologies will...


December 15, 2014

Home Health Leaders Commend Congress on Budget Deal - PRNewswire

WASHINGTON, Dec. 15, 2014 /PRNewswire-USNewswire/ -- The Partnership for Quality Home Healthcare – a leading coalition of home health providers dedicated to improving the integrity, quality, and efficiency of home healthcare for our nation's seniors – today commended...



Governments of Canada and Prince Edward Island take action to help Islanders get jobs faster - PRNewswire

SUMMERSIDE, PEI, Dec. 15, 2014 /CNW/ - Today, the Government of Canada announced nearly $4 million in funding to Prince Edward Island (PEI) for two projects that will help young people and newcomers find work in their fields. The governments also renewed two agreements that will...



Feds Inch Closer To Disability Hiring Goal - DisabiltyScoop
The federal government added people with disabilities to its payroll at a higher rate last year than at any other time in the last three decades.

Division of Human Development and Disability's New Director, Dr. Georgina Peacock - AUCD
Georgina Peacock, MD, MPH, FAAP has been appointed as the Director of the Division of Human Development and Disability. Dr. Peacock has served as the Acting Director for the past four months, but she assumed the role permanently on Monday, December 15, 2014.

Ohio Insurance Reform Delayed Into 2015 - Autism Speaks - Advocasy
December 08, 2014

An attempt to expand autism insurance coverage in Ohio in 2014to include state-regulated plans was quashed by a committee chairman who said he would refuse to consider the measure.

Rep. Lynn Wachtmann of Napoleon, who chairs the House Health and Aging Committee, said he would refuse to move the bill before he leaves the Legislature at the end ofthis month.

Children of state employees and those covered under the Affordable Care Act gained coverage this year by virtue of an executive order issued by Gov. John Kasich, but those with private health plans regulated by the state continue to be denied coverage for applied behavior analysis (ABA) and other treatments.

The autism insurance reform campaign will resume in 2015 to make Ohio the 39th state to require coverage of medcially necessary treatment.

December 12, 2014

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

Public reaction sought through December 24

December 12, 2014

Michiganhas 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.

TheMichigan Department of Community Health said it "will be developing a transition plan to bring its waiver programs into compliance with the new regulations while continuing to provide vital services and supports to Michigan citizens. The Department is committed to an inclusive process partnering with people receiving services, their allies, health care providers, and other organizations to create a transition plan that serves the best interests of the people of Michigan while also meeting requirements from the Centers for Medicare and Medicaid Services."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 24. Further information is available at the Michigan Department of Community Health HERE.

To submit written comments, send them by email to: HCBSTransition@michigan.gov or by mail to:

Attention: HCBS Program Transition
Medicaid Policy
Michigan Department of Community Health
P.O. Box 30479
Lansing, Michigan 48909-7979

All comments should include a "HCBS Transition Plan Comment" reference somewhere in the written submission or in the subject line if an e-mail is used.

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.Michigan 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?

Michiganis 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?

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

Public comment ends December 15

December 12, 2014

Connecticuthas 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 plan was developed by the Connecticut Department of Disability Services which reports that the only public comments it has received to date are from "two area agencies on aging, a care management organization, and an advocacy organization." No comments were reported from people with autism or their caregivers.

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 Connecticut Department of Developmental Services (DDS)HERE.

To submit comments, email DDS.HCBSTransition@ct.gov; call:(860) 418-8723; or fax your written comments to:(860) 622-2675.

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.Connecticut DDS 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?

Connecticutis 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?

Bell Law Group to Award $1,000 Wheelchair Disability Scholarship - PRNewswire

NEW YORK, Dec. 12, 2014 /PRNewswire/ -- Making law school a little more accessible and affordable for one student, the Bell Law Group is launching a new $1,000 Wheelchair Disability Scholarship. With a wealth of experience supporting disability discrimination claims, the Bell Law Group is...



Special Ed, Disability Programs Unscathed In Budget Deal - DisabiltyScoop
A spending plan making its way through Congress is a win for people with disabilities, advocates say, more for what it doesn't do than what it does.

Effectiveness Of Cerebral Palsy Treatment Weighed - DisabiltyScoop
A surgery that improves mobility for some kids with cerebral palsy leaves others even more likely to lose balance. Now researchers are working to understand who's most likely to benefit.

Save the Date - 2015 UCEDD Directors Retreat and TA Institute - AUCD
These meetings provide an opportunity for UCEDD leaders to network, meet with their federal project officers, and learn of new initiatives, national trends, and other information vital to the administration of the UCEDD programs.

2015 UCEDD Leadership Institute - Save the Dates! - AUCD
After another successful year, the UCEDD Leadership Institute will be back in 2015! Please consider recommending your staff for the 2015 class of future UCEDD leaders representing the full diversity of the country.

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

Public reaction sought through December 26

December 12, 2014

West Virginiahas 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.

According to the state Department of Health and Human Resources, "The Centers for Medicare & Medicaid Services (CMS) recently released new regulations and guidance on the delivery of home and community-based services (HCBS) offered through Medicaid waiver programs. Through this new rule, CMS intends to ensure that individuals receiving HCBS through Medicaid waivers have full access to integrated, community living including receiving services in the most integrated setting possible."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 26. Further information is available at the West Virginia Department of Health and Human Resources HERE.

To submit written comments, send them by email to WVWaiverTransitions@wv.gov, or

Mail comments to:
Bureau for Medical Services
ATTN: WV HCBS Waiver Transition Plan
350 Capitol Street, Room 251
Charleston, WV 25301

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.West Virginiahas 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?

West Virginiais 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?
December 11, 2014

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

Public reaction sought through December 26

December 10, 2014

Wisconsinhas 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 federal requirements, according to theWisconsin Department of Public Health, is to "ensure that Medicaid long-term care programs provide full access to the benefits of community living and offer services in the most integrated settings. The state must submit a statewide transition plan that identifies how it will come into compliance with the new outcome-oriented definition of HCBS settings by March 17, 2019."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 29. Further information is available at the Wisconsin Department of Public Health HERE.

To submit written comments, send them by email to: DHSWebmailDLTC@wisconsin.gov; writeStatewide Transition Planin the subject line. Written comments also can be mailed to:

Division of Long Term Care
Attn: Statewide Transition Plan
1 West Wilson St, Room 518
PO Box 7851
Madison WI 53707-7851

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.Wisconsin 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?

Wisconsinis 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?

AUCD Welcomes New Staff - AUCD
AUCD is pleased to welcome several new and talented staff to our Central Office! We are excited about the expertise they bring and the contributions we are confident they'll make in working for the network and people with disabilities.

Accomplished Cross-Sector Leader Named UCP Chair - UPC
Effective October 1, United Cerebral Palsy’s Board of Trustees welcomed new members and several new officers to help lead the national nonprofit organization for people with disabilities and their families. UCP has more than 80 affiliates in the U.S. and internationally. Gloria …
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Former Deputy Secretary of Labor, LinkedIn VP, Business Leader to Contribute to UCP's Mission - UPC
  United Cerebral Palsy (UCP) elected ten members to its Board of Trustees during its 2014 Annual Conference in Nashville, Tennessee including three members new to the organization. Seth Harris, former U.S. Deputy Secretary of Labor, Pablo Chavez, LinkedIn's Vice …
Read More

Father and Son Racing Duo Inspire Teams to Get Active, Support UCP - UPC
United Cerebral Palsy (UCP) is honored to announce that Team Hoyt, Rick Hoyt of Sturbridge, MA and Dick Hoyt of Holland, MA, will serve as the 2014 Steptember event Ambassadors. Steptember is a four-week event to raise awareness and support for …
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UCP RELEASES ANNUAL REPORT ON STATES SERVING AMERICANS WITH DISABILITIES - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP RELEASES ANNUAL REPORT ON STATES SERVING AMERICANS WITH DISABILITIES  8th annual Case for Inclusion report ranks, compares states on Medicaid outcomes Washington, D.C. (April 17, 2014) – United Cerebral Palsy (UCP) …
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UCP ANNOUNCES 2014 AWARDS FOR EXCELLENCE - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP ANNOUNCES 2014 AWARDS FOR EXCELLENCE Annual awards honor exceptional people, programs and partnerships across the UCP affiliate network Washington, D.C. (April 14, 2014) – United Cerebral Palsy (UCP) is honored to announce the …
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WORLD CP DAY 2014 IDEAS ANNOUNCED - UPC
FOR IMMEDIATE RELEASE                                                                      CONTACT:   January 20, 2014                                                                Kaelan Richards: 202-973-7175                                                                                                                  krichards@ucp.org $50,000 prize pool for anyone who can bring the ideas to life! More than 400 ideas submitted through “Change My World in 1 Minute” contest to help people with disabilities around …
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The Arc and UCP React to Offensive Language to People with Disabilities in The Wolf of Wall Street - UPC
For Immediate Release                                                  Contact (The Arc): Kristen McKiernan January 13, 2014           …
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UCP HOLDS FIRST INTERNATIONAL DESIGN-ATHON - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP HOLDS FIRST INTERNATIONAL DESIGN-ATHON More than 100 hackers, makers and inventors gather to design and create accessible design prototypes Washington, D.C. (November 9, 2013) – United Cerebral Palsy (UCP)'s Life Labs, a technology and grassroots-focused initiative dedicated to identifying, …
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UCP ANNOUNCES WORLD CEREBRAL PALSY CHALLENGE SUCCESS - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP ANNOUNCES WORLD CEREBRAL PALSY CHALLENGE SUCCESS  International fundraising and fitness event raises more than $180,000 in U.S., $1.6 million worldwide Washington, DC (November 8, 2013) – United Cerebral Palsy (UCP) has …
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Dollars And Doctors For Medicaid Shrink As Enrollment Grows - Autism Speaks - Advocasy

New reports find massive fee cuts, nonexistent doctors

December 11, 2014

WASHINGTON, DC -- Just as access to Medicaid-funded treatmentfor autismis growing, two new reports show doctors facesteep fee cuts and that half the providers listed as "participating" in state Medicaid managed care programsin fact do notparticipate or have stopped accepting new patients.

One third of American children with autism are covered through Medicaid and that coverage is expected to expand due to recent federal directives. In addition, 9.1 million new patients have enrolled in Medicaid under theAffordable Care Act. Medicaid is funded jointly by the federal and state governments and largely managed at the state level.

"When providers aren't available, it doesn't matter whether a state says they cover a particular benefit, such as applied behavior analysis, through their Medicaid program," said Angelo Lello, Autism Speaks' director of housing and community living. "The end result is Medicaid beneficiaries won't get those benefits. Access to benefits is essentially denied when providers are not available."

According to a new reportissued by theU.S. Department of Health and Human Services' (HHS) inspector general, over half the doctors listed as participating physicians in Medicaid managed care plans run by the states were misidentifed, do not accept new patients or couldn't be found at their listed office address.

The HHS report was in response to arequest from Congress to examine the access to care throughMedicaid managed care plans offered by the states. Most states now provide some, if not all, of their Medicaid services through managed care plans which are run primarily by for-profit companies.

Surveying arandom sample of 1,800 primary care providers and specialists, HHS found:

  • 35% couldn't be found at the location listed in the Medicaid plan
  • 8% said they did not participate in Medicaid
  • 8% said they were not accepting new Medicaid patients

While themedian wait time for those physicians who do participate wastwo weeks,over a quarter had wait times exceding one month, and 10 percent had wait times longer thantwo months. While primary care providers were less likely to offer an appointment than specialists, the specialists tended to have longer wait times.

The second report, an analysis by the Urban Institute, forecasts that the average Medicaid payment to primary care providers will drop 42 percent in 2015 with theexpiration of a two-year federal supplement at the end of December. The Urban Institute found 15 states that will continue the supplement with their own funds, but at least 24 others would not with the others undecided at the time of the survey in October.

"The 23 states included in this analysis that do not plan to continue the fee increase cover 71.3 percent of all Medicaid enrollees; the states that intend to continue the increase cover only 15.6 percent of Medicaid enrollees," according to the report. "In seven of the states that do not plan to continue the fee increase with state funds, Medicaid primary care fees for eligible codes will fall by 50 percent or more (Rhode Island, California, New York, New Jersey, Florida, Pennsylvania, and Illinois)."


AUCD Announces 2014 Trainee Scholarship Recipients - AUCD
AUCD is proud to sponsor 20 trainees with scholarships to the AUCD 2014 Conference. The trainees selected come from 17 centers, and represent both LENDs and UCEDDs in over 10 disciplines.

AUCD2014 Has Gone Mobile! - AUCD
Check out the 2014 AUCD App Guide for a detailed overview of how to download the app and how to access everything in it. See you in 4 days! Schedule, Maps, Twitter and ore on your mobile device - completely free.

Defense Department Working to Hire More People with Disabilities - AUCD
The U.S. Department of Defense (DoD) is taking steps to become a model employer of people with disabilities. Its new director of disability programs, Randy Cooper, is leading a department-wide effort to hire more people with disabilities, including troops wounded in Iraq and Afghanistan.

NPR's Shankar Vedantam to Speak at AUCD2014 - AUCD
Shankar Vedantam is a science correspondent for NPR. The focus of his reporting is on human behavior and the social sciences, and how research in those fields can get listeners to think about the news in unusual and interesting ways. Before joining NPR in 2011, Vedantam spent 10 years as a reporter at The Washington Post. From 2007 to 2009, he was also a columnist, and wrote the Department of Human Behavior column for the Post. Vedantam writes an occasional column for Slate called "Hidden Brain."

Letter to CMS Providing Comments on Speech Generating Devices - AUCD
On December 5, 2014, AUCD provided Laurence Wilson, the Director of the Chronic Care Policy Group of the Centers for Medicare and Medicaid Services in the United States Department of Health and Human Services comment on Speech Generating Devices. AUCD's special interest group on assistive technology worked in coalition with other researchers, health professionals, service providers, and individuals with disabilities and their families to provide the following comments with respect to the National Coverage Decision (NCD).
Last updated : December 17, 2014 - 09:01:17
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