Tuesday, October 17, 2017

Swimming Lessons for those with Autism

The National Autism Association lists these YMCA sites as resources for specialized swim instruction:

You can find the list here: http://nationalautismassociation.org/resources/autism-safety-facts/swimming-instructions/

ASI also has a list here: http://www.autismsocietyofindiana.org/adaptive-swim-lessons/

The Importance of Water Safety

from Autism Speaks:

Water safety is especially critical for children and adults with autism, as many individuals on the spectrum are drawn to water, some of whom are unable to understand the dangers associated with it. Tragically, the leading cause of death among individuals with autism after wandering is drowning. 
Autism Speaks has put together some tips to help keep your child safe around water.

1. Start Early

It is never too early to start teaching your child the importance of water safety. Expose your child to water at a young age so he or she can become comfortable around it. Use visuals like picture cards or social stories to teach rules related to water and maximize learning. Be on the lookout for a tendency toward or special interest in water. 
You can personalize a story about water safety from Twigtales here.

2. Sign Up for Swim Lessons

The most obvious way to help prevent tragedy around water is to teach your child to swim. Many organizations offer lessons specifically for children with special needs. Check to see if there is an Autism Speaks grant recipient swim program near you here. Remember that special needs swim lessons aren't just about swimming itself, but about how to be safe around water.
Many YMCAs offer special needs swim instruction, so this could be another option to consider. Find the location nearest you here. Swim Angelfish is a swim program that has produced some videos with tips and strategies for teaching swimming on their YouTube page. Keep the lessons fun and interactive. 
If you aren't aware of any formal programs, see if an avid swimmer or special education teacher in your area can help with lessons.  

3. Emphasize the Dangers of Water

Staying safe around water is about more than just the ability to swim. A second component is making sure individuals with autism understand the importance of water safety. Some children and adults with autism are capable swimmers, but their attraction to water can still lead them into dangerous situations - like a river with a strong current, a shallow pool or an unsafe temperature. Make sure the individual understands all of the dangers associated with water.

4. Take Precautions to Prevent Wandering

If your child is drawn to water, take safety precautions to keep him or her away. If you have a pool or live near one, be sure the pool is gated and inaccessible. Put window and door alarms on your home so you know if your child has left unsupervised. Never leave your child unaccompanied or out of your sight near water.
Autism Speaks has many wandering prevention resources here.

5. Spread the Word

Let your neighbors know about your child's tendency to wander and his or her attraction to water so they can be on high alert. A flyer with information specific to your child can be very helpful. You can find an example of a Neighbor Alert Letter here.
You may also want to alert first responders in your area. Fill out this Autism Elopment Alert Form to share information specifically about your child. 
For additional safety information and resources, contact the Autism Speaks Autism Response Team at 888-288-4762 (Spanish 888-772-9050) orfamilyservices@autismspeaks.org.

Monday, October 16, 2017

Family Voices Immigration Toolkit

·     New Release! Family Voices Immigration Toolkit

Developed by Family Voices, this toolkit includes documents designed to inform, empower, and assist families of children and youth with special health care needs (CYSHCN) and the professionals who support them. 

Documents assist in the preparation of a possible emergent immigration situation by accurately reflecting the hardship on the health and well-being of a child with special health care needs if they or their caregiver is detained and removed. 

The resources included in the toolkit geared towards families are currently available in English and Spanish. Resources are also available to support physicians speaking with patients and family/caregivers about immigration status in a sensitive manner.

Friday, October 13, 2017

ACA Open Enrollment Begins Nov 1

Open Enrollment for 2018 health plans through the Health Insurance Marketplace starts next month.  If you don't have health insurance through a job, Medicare, Medicaid, the Children's Health Insurance Program (CHIP), or another source of qualifying coverage, the Marketplace can help you get covered.  Use these outreach and enrollment tools to promote the open enrollment period with clients, community partners and more.  Important dates to note for outreach and enrollment activities include:
  • November 1, 2017: Open Enrollment starts - first day you can enroll, re-enroll, or change a 2018 insurance plan through the Health Insurance Marketplace. Coverage can start as soon as January 1, 2018
  • December 15, 2017: Last day to enroll in or change plans for coverage to start January 1, 2018
  • January 1, 2018: 2018 coverage starts for those who enroll or change plans byDecember 15.
  • January 31, 2018: Last day to enroll in or change a 2018 health plan. After this date, you can enroll or change plans only if you qualify for a special enrollment period. 

Tuesday, October 10, 2017

Caregivers Act Clears Senate

Legislation to establish a federal strategy to address the needs of family caregivers — including those supporting people with developmental disabilities — is gaining steam.

The U.S. Senate unanimously approved a bill known as the Recognize, Assist, Include, Support and Engage, or RAISE Family Caregivers Act late last month. The legislation now goes before the House of Representatives.

The measure would direct the secretary of health and human services to create and implement a national plan to “recognize and support family caregivers” that incorporates recommended steps that can be undertaken at the federal, state and local level.

In addition, the bill calls for the secretary to convene a family caregiving advisory council comprised of federal officials and stakeholders in the community to weigh in on what the government can do to assist an estimated 40 million family caregivers nationally.

Sponsored by lawmakers from both parties, the caregivers act has support from Autism Speaks, the Autism Society, Easterseals, United Cerebral Palsy, The Arc and other disability groups.

“By passing the bipartisan RAISE Family Caregivers Act in the Senate, we have taken an important step forward to formally recognize and support our family caregivers across America,” said Sen. Tammy Baldwin, D-Wis., who spearheaded the legislation along with Sen. Susan Collins, R-Maine. “If we are serious about ensuring that our older adults and loved ones with disabilities receive the highest quality care in their own homes, then we owe it to our current and future generations to continue to fight to see the RAISE Family Caregivers Act move forward and be signed into law.”
Read and share the full article from Disability Scoop: https://www.disabilityscoop.com/2017/10/10/caregivers-act-clears-senate/24279/

Action Alert: Oct 11 Call In Day for CHIP

CHIP Advocacy Toolkit 
Groups are encouraged to use a new CHIP advocacy toolkit. We encourage you to use the resources and information in this toolkit to join our efforts and amplify the message that Congress cannot wait any longer to take action. In particular, we are planning the second of two days of action on Wednesday, October 11. Please feel free to share this information far and wide within your networks. Thank you for your continued commitment to speaking up for children, pregnant women and families.

Wednesday, October 4, 2017

Legislative update

From National Family Voices:


On Wednesday, both the Senate Finance Committee and the House Energy & Commerce Committee will take up ("mark up") legislation to extend funding for the CHIP program for five years - what advocates had hoped for. (See details below.) The House committee will also mark up several other bills to extend various programs, including...

Family-to-Family Health Information Centers! In addition to the CHIP bill, the House committee will also mark up the "Community Health And Medical Professionals Improve Our Nation," or CHAMPION Act. This bill provides for an extension of funding for Family-to-Family Health Information Centers (F2Fs) for two more years (FYs 2018 and 2019) at $6 million per year (an increase of $1 million per year), AND calls for F2Fs to be developed in all territories and for at least one Indian tribe. (See Section 104, pp. 21-22.) The territories are Puerto Rico, Guam, American Samoa, the Virgin Islands, and the Northern Mariana Islands.

The CHAMPION Act also extends funding for Community Health Centers, the Special Diabetes Programs, the National Health Service Corps, Teaching Health Center Graduate Medical Education, the Youth Empowerment Program, and the Personal Responsibility Education Program.

Unfortunately, the House bill pays for the cost of the CHAMPION Act by cutting the Prevention and Public Health Fund, which currently pays for important programs of the CDC, including childhood immunizations and lead poisoning prevention, among other activities. If the Prevention Fund is no longer available for those programs, then there will be less money for other important appropriated programs in the health and education budgets. Hopefully, this offset (a.k.a. "pay-for") will be amended as the bill moves through the legislative process. The Senate bill does not include an offset.

CHIP billsThe House bill - the "Helping Ensure Access for Little Ones, Toddlers, and Hopeful Youth by Keeping Insurance Delivery Stable" (HEALTHY KIDS) Act - closely mirrors the Senate bill - the "Keep Kids' Insurance Dependable and Secure" (KIDS) Act. In addition to extending CHIP funding for five more years - through FY 2022 - both the House and Senate CHIP bills:
  • Extend the current 23-percentage-point "bump" in the CHIP matching rate through FY 2019, phasing down to 11.5 percentage points in FY 2020 and then reverting to the regular CHIP matching rate in FYs 2021 and 2022.
  • Extend the CHIP maintenance-of-effort (MOE) requirements for children in families with annual income less than 300% of the federal poverty level for three additional years (FYs 2020-2022). Under current law, the MOE applies through FY 2019 to children in families with income less than 400% of the poverty level, but most CHIP enrollees are in the below-300% group anyway. See Positive Development for CHIP Emerges from Senate Finance Committee Leaders.
  • Extend Express Lane Eligibility, the Qualifying State Option and the Child Contingency Fund for five years, and include five years of funding for the following programs at levels specified under current law: the Childhood Obesity Demonstration Project; the Pediatric Quality Measures Program; and Outreach and Enrollment Grants.
The House CHIP bill is paid for by changing Medicaid third-party-liability rules, which could jeopardize reimbursement for prenatal care and pediatric preventive services.

A summary of the HEALTHY KIDS Act (CHIP), CHAMPION Act (F2Fs), and other bills to be marked up in the Energy & Commerce Committee can be found at http://docs.house.gov/meetings/IF/IF14/20171004/106486/HMKP-115-IF14-20171004-SD002-U2.pdf.

The Senate Finance Committee will be marking up only the CHIP legislation, the KIDS Act. Amendments will be offered, but some or all of them may be withdrawn. (Committee members offer and withdraw amendments to show their support for a program or provision when they know that the amendment will not be adopted, cannot be paid for, or leadership does not want amendments.)

Next steps: Assuming the House Energy and Commerce Committee and Senate Finance Committee approve the legislation, the bills must be passed by the full House and Senate, respectively. Any differences must be resolved and then each chamber must vote on the compromise legislation. Once the president signs it, it will become law. Despite the time-sensitivity of the CHIP legislation, this process could take a while. It may be particularly difficult to reach an agreement on how to pay for the cost of the bills.

To watch the markups:

The House Energy & Commerce Committee is scheduled to hold its markup Wednesday, October 4, at 1:00 pm ET. It is not clear whether this will be broadcast, although it probably will be, at either https://energycommerce.house.gov/ OR https://energycommerce.house.gov/markups/energy-commerce-committee-vote-h-r-849-h-r-1148-h-r-2465-h-r-2557-h-r-3120-h-r-3245-h-r-3263-h-r-3271-h-r-__-champion-act-h-r-__-healthy-kids-act/.