Washington DC Update

Steve Gleason Act Passed by Congress – Improves Medicare Policy Concerning Speech Generating Devices

The “Steve Gleason Act of 2015″ (S. 984; H.R. 1919) has been approved by both the House and Senate, and will now be sent to the President. The bill amends Medicare law to remove (effective January 1, 2016) the cap on payment for eye tracking and gaze interaction accessories for speech generating devices furnished to individuals with a demonstrated medical need for them. Payment for such devices can be made on a rental basis or in a lump-sum amount for the purchase of the item. These devices are used by stroke survivors, individuals with traumatic brain injury, Parkinson’s disease, Amyotrophic Lateral Sclerosis (ALS), and other complex neurological conditions that limit an individual’s voluntary muscle control. The bill also establishes that a beneficiary owns a speech generating device (SGD) upon receipt, rather than after a 13-month rental period (as under current regulations), effective from October 1, 2015 through September 30, 2018. Accordingly, beneficiaries will be able modify their SGDs at their own expense, and will be able to use the devices while they are in hospitals and nursing homes, contrary to current regulations. (See House Report 114-178.)

Input Sought on Family Caregiver Survey (Compensation available)

The Office of the Assistant Secretary for Planning and Evaluation (ASPE) at the US Department of Health and Human Services and Abt Associates are developing a survey to learn more about the experiences of family caregivers of children and adults with disabilities. Caregivers providing unpaid assistance to a person under 65 with a disability or chronic condition are invited to assist in testing the clarity of the survey questions. Participation includes a 60- to 90-minute interview at a location of the participant’s choice and $100 compensation for their time. If interested, please call Tiffany at Abt Associates, Inc., at 301-628-5518.

Public Comment Sought on Improving Home and Community-Based Services (Comments due August 17, 2015, 6:00 pm ET)

The National Quality Forum (NQF) has convened a stakeholder committee to develop recommendations to improve quality measurement in home and community based services. NQF recently released an interim report entitled “Addressing Performance Measure Gaps in Home and Community-Based Services to Support Community Living: Initial Components of the Conceptual Framework,” and is seeking public input on the topic. For more information on the committee and its work, and to submit comments, see this NQF webpage.

New Study on Autism Spectrum Disorders

As announced last week by the National Institute of Mental Health (NIMH), government, non-profit, and other private partners will fund a new, multi-year project to develop and improve clinical research tools for studying autism spectrum disorder (ASD). In addition to the NIMH, supporters include the National Institutes of Health (NIH), the Foundation for the NIH (FNIH), the Simons Foundation Autism Research Initiative (SFARI), the National Institute of Neurological Disorders and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The four-year partnership will help fund a study of preschool (3-5 years) and school-aged (6-11 years) children with ASD to identify non-invasive biological markers (biomarkers) that could help physicians diagnose the condition, track progression, and assess the effectiveness of treatment. The project will be managed under the FNIH Biomarkers Consortium.

Health Plan Selection for People with Disabilities
The National Disability Navigator Resource Collaborative (NDNRC), of which Family Voices is a partner, has released six videos addressing some of the main topics that people with disabilities need to consider when selecting an insurance plan on the ACA marketplace. The videos range in length from 3 ½ minutes to six minutes so that they can be viewed in short increments. Each video presents scenarios of potential consumers a navigator might meet, and addresses the questions they need to be asking when looking to enroll in coverage in the ACA Marketplace.

All six of these videos can be accessed on the NDNRC YouTube channel which can be accessed here and they are also all available on the NDNRC “Webinar/Presentations” page, available here. To view them all at once, view the playlist on YouTube by clicking here. Or you can access all six videos through the topic links below.

10 Things to Know about the Americans with Disabilities Act (ADA)

This article in the Disability Connection newsletter lists ten things to know about the ADA, and provides a great deal of information on implementation of the Act in general and its application with respect to employment, service animals, pregnancy, veterans, emergency planning, and access to health facilities and swimming pools.

For more information about the ADA, visit Disability.gov’s Americans with Disabilities Act (ADA) Web page, visit its Facebook page, or follow it on Twitter (use #DisabilityConnection to talk about this newsletter). The Disability.Blog and past issues of the Disability Connection newsletter are also available. The latest issue of theDisability.Blog is about the Disability Visibility Project, which seeks to document the experiences and diversity of Americans with disabilities and publish their stories.

10 Things Parents of Children with Developmental Disabilities Should Know

Disability.gov is the U.S. federal government website for information on disability programs and services nationwide. The site connects people with disabilities, their families and caregivers to helpful resources on topics such as how to apply for disability benefits, find a job, get health care or pay for accessible housing. It also provides links to community organizations for people with disabilities. Disability.gov recently issued “Ten Things Parents of Children with Developmental Disabilities Should Know,” which concisely addresses topics such as early intervention, special education, special health care needs (with links to pediatric dental resources), transition to adulthood, self-determination, planning for the future, and the rights of children with disabilities and their parents. Each topic includes links to resources with additional information.

Workshop for Blended Families

Dear Community Partners,

We would like to let you know that Yvette will be offering a special workshop for blended families, called SmartStep Family Workshop, on Friday July 18, 2015 9am—3pm at Colorado Christian Fellowship 10630 E Iliff Avenue, CO 80014.

Please pass this information on to the families that you serve.  To reserve a space, families may RSVP to: Phone:303-632-6840 or Email: yvette@thrivectr.org by Wednesday, July 15, 2015.

All the best,

Lori Parker

Bilingual Parent Advisor and Community Outreach Coordinator

Denver Metro Community Parent Resource Center

Centro de Recursos para Padres en la Comunidad de Denver Metropolitano

lorip@denvermetrocprc.org

www.denvermetrocprc.org

2600 S. Parker Road

Building 3, Suite 332

Aurora, CO 80014

303-365-2772

Making Colorado a better place for children and youth with special health care needs

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