Monday, October 21, 2019

Dispelling Myths about the ACA

Dispelling Myths 

There’s a lot of confusion among both the remaining uninsured and current marketplace consumers about what exactly has changed, what hasn’t, and what are the best options for enrolling in coverage. We’re busting some of the most common myths about the ACA - check them out below. 

Myth #1: Financial help to lower premiums and out-of-pocket costs is no longer available.  FALSE. Financial assistance is still available for low and middle-income consumers to help lower the cost of their plan. In fact, more than 8 out of 10 consumers last year qualified for a tax credit. 

Myth #2: The marketplace is not stable and premiums are skyrocketing. FALSE. In fact, premium price increases for 2020 are expected to be much lower than previous years (projected at .1% nationally), and some states will even see price decreases. Increased insurer participation also indicates that the marketplace is stabilizing.

Myth #3: I am no longer protected from discrimination for having a pre-existing condition. FALSE. All of the consumer protections created by the ACA are still intact, and all plans sold by HealthCare.Gov must provide comprehensive coverage, and cannot charge a consumer more because of their health status or medical history. Plans outside the ACA marketplace don’t have to offer the same protections, so always make sure to use HealthCare.Gov when enrolling in coverage.

Friday, October 18, 2019

Top 5 Things to Know about ACA Open Enrollment

 Top 5 Things to Know about Open Enrollment 

  1. When: November 1, 2019 - December 15, 2019 (some states may extend their deadlines, but in order to have coverage that begins January 1, you must enroll by December 15)
  2. Where: HealthCare.Gov Always start with HealthCare.Gov. If your state uses their own website, HealthCare.Gov will guide you there. HealthCare.Gov or your state-based marketplace can only sell ACA plans, so you can rest easy knowing you’re getting a comprehensive plan that will be there for you when you need it. 
  3. What: Comprehensive coverage at an affordable price. HealthCare.Gov plans must include key benefits like mental health care, maternity care, prescription drug coverage and hospitalization services. In addition to good coverage, most marketplace shoppers will qualify for a discount based on their income. Last year, more than 8 in 10 shoppers could get a plan for less than $100/month.  
  4. Why: Peace of mind. Financial security. Access to comprehensive care. There are so many reasons to sign up for affordable, comprehensive coverage, join the millions who have gained health insurance thanks to the ACA!  
  5. How: Enroll online, over the phone, or in-person. Log on to the official ACA marketplace at HealthCare.Gov, or CuidadodeSalud.Gov, call the marketplace call center at 1-800-318-2596, or make an appointment for in-person assistance through the Get Covered Connector

Friday, October 11, 2019

Congressional Recess

from National FV:

Congress is in recess until October 15. When they return, they must address FY 2020 appropriations, because the "continuing resolution" enacted last month expires on November 21. See Short-Term Funding Bill Keeps Government Open, Also Includes Sound Provision Reducing Federal and State Medicaid Drug Costs (Georgetown Center for Children and Families blog post, 10/3/19). There is still continued interest in addressing prescription drug prices and surprise medical billing. Those are both controversial issues, however, so it may be difficult to craft legislation that can get through Congress. More information about these issues can be found in the October 3 Update.
With respect to surprise medical bills, the chairman of the House Ways and Means Committee, Richard Neal (D-MA), has suggested that Congress enact a law requiring the administration to undertake a "negotiated rulemaking process." Under such a plan, the administration would convene a committee consisting of key stakeholders (doctors, hospitals, insurers) and the Departments of Health and Human Services, Treasury, and Labor. That committee would recommend parameters for setting payment rates for surprise bills, while ensuring that consumers would be held harmless. The federal departments would then develop a proposed rule with a public comment period. The key stakeholders have different positions on how to pay these out-of-network payments. Physicians, physician practice groups, and hospitals prefer negotiated rates, while insurers prefer a "benchmark" approach. A good explanation of the issue can be found in The Health 202: Doctors Are Gaining the Edge in Fight over Surprise Medical Billing (Washington Post, 9/23/19). See also We Need Benchmarking, Not Arbitration, to Quell
Surprise Medical Billing (STAT's 'First Opinion" blog post, 10/7/19).
With respect to prescription drug prices, it has been reported that staffers from the administration and House Speaker Nancy Pelosi have been discussing her bill on the topic. See Trump and Pelosi Aides Talk Drug Costs Despite Impeachment (Associated Press, 10/1/19).
Meanwhile, many states are addressing these issues. See:

Thursday, October 10, 2019



Tuesday, October 22, 2:00 pm ET
Center on Budget and Policy Priorities
Tuesday, October 29, 2:00 pm ET
Center on Budget and Policy Priorities
Thursday, October 31, 2:00 pm ET
Center on Budget and Policy Priorities
Series archive:
Tuesday, October 1, 2:00 pm ET
Part II: Premium Tax Credits 
Thursday, October 3, 2:00 pm ET

Thursday, October 10, 3:00-4:15 pm ET
Family Voices Leadership in Family and Professional Partnerships (LFPP)
LFPP works to increase engagement of families of CYSHCN at all levels of health care through the provision of assistance, training, and resources to Family-to-Family Health Information Centers, Title V programs, and other CYSHCN stakeholders.
Tuesday, October 15, 1:00 pm ET
Centers for Disease Control and Prevention (CDC), Public Health Grand Rounds
Tuesday, October 15, 2:00-3:30 pm ET
National Center on Early Childhood Health and Wellness
Thursday, October 17, 3:00-4:00 pm ET
Coalition for Compassionate Care of California, Pennsylvania's Pediatric Palliative Care Coalition, and Greater Illinois Pediatric Palliative Care Coalition
Complimentary for parents.
Wednesday, October 23, 12:30-2:00 pm ET
The National Institute for Health Care Management (NIHCM) Foundation
Wednesday, October 23, 1:30-2:30 pm ET
Lucile Packard Foundation for Children's Health
Wednesday, October 23, 3:00-4:00 pm ET
Healthy Students, Promising Futures Learning Collaborative
Thursday, October 24, 2:00-3:15 pm ET
ABLE National Resource Center
Tuesday, October 29, 3:00-4:30 pm ET
National Center on Advancing Person-Centered Practices and Systems
Thursday, November 14, 2:00-3:00 pm ET
Healthy Students, Promising Futures Learning Collaborative
National Quality Forum/Administration for Community Living; Centers for Medicare and Medicaid Services
  • Friday, December 13, 2019, 1:00-3:30 pm ET
  • Monday, January 6, 2020, 1:00-3:30 pm ET
  • Monday, February 3, 2020, 12:30-3:00 pm ET
  • Monday, June 1, 2020, 1:00-3:30 pm ET
  • [past] Friday, September 6, 2019

Wednesday, October 9, 2019

Siblings Perspectives: Some Guidelines for Parents

from IIDC:

Siblings Perspectives:
Some Guidelines for Parents

Contributed by Marci Wheeler M.S.W.

two siblings playing side by side with play doh

There is little doubt that those of us raised with siblings have been influenced by that relationship. Living with a brother or sister with an autism spectrum disorder adds more significant and unique experiences to that relationship. Throughout numerous accounts of parents and siblings of children with disabilities it becomes very clear; when a child in the family has a disability, it affects the whole family. Also clear is that families and each member can be both strengthened and stressed from this situation. It is the degree of these conflicting effects that seem to vary from family to family and person to person. There are some factors that have been found to help strengthen families and minimize the stressors. This brief article is meant to arm you with important information and practical suggestions for helping and supporting siblings.
Though limited research has been done, a child’s response to growing up with a brother or sister with a disability is influenced by many factors such as age, temperament, personality, birth order, gender, parental attitudes and modeling, and informal and formal supports and resources available. Certainly parents have little control over many of these factors. However, parents do have charge of their attitudes and the examples they set. Research by Debra Lobato found that siblings describing their own experiences consistently mentioned their parents’ reactions, acceptance and adjustment as the most significant influence on their experience of having a brother or sister with a disability (Lobato, 1990).
It is also important to note from Lobato’s research that a mother’s mental and physical health is probably the most important factor in predicting sibling adjustment regardless of the presence of disability in the family (Lobato, 1990). Positive outcomes that siblings frequently mention are learning patience, tolerance, and compassion and opportunities to handle difficult situations. These opportunities also taught them confidence for handling other difficult challenges. Research by Susan McHale and colleagues found that siblings without disabilities viewed their relationship with their brother or sister with autism as positive when: 1) they had an understanding of the siblings disability; 2) they had well developed coping abilities; and 3) they experienced positive responses from parents and peers toward the sibling with autism (McHale et al., 1986).
There are negative experiences of having a sibling with an autism spectrum disorder that should be acknowledged and addressed. Anxiety, anger, jealousy, embarrassment, loss, and loneliness are all emotions that children will likely experience. Because of the nature of autism spectrum disorders there are barriers to the sibling bond that can cause additional stress as a result; communication and play can be difficult between siblings when one has an autism spectrum disorder. Often the sibling without the disability is asked to assume or may on their own feel obligated to assume the role of caretaker. It is best to be proactive in addressing these issues. Siblings are members of the family that need information, reassurance and coping strategies just as parents do.
Each family is unique. There are various family structures such as single parents, multi-generational households, and households with other significant stressors including more than one member with a disability. Each family has its own beliefs, values, and needs. Regardless of family circumstances, the suggestions for parents discussed here should be viewed as supportive strategies that can be considered to assist siblings in coping with having a brother or sister with an autism spectrum disorder.

Twelve Important Needs of Siblings and Tips to Address These Needs

  1. Siblings need communication that is open, honest, developmentally appropriate, and ongoing. Parents may need to deal with their own thoughts and feelings before they can effectively share information with siblings. Children may show their stress through their withdrawal or through inappropriate behaviors. Parents should be alert to the need to initiate communication with their son/daughter. Siblings may be reluctant to ask questions due to not knowing what to ask or out of fear of hurting the parent. While doing research on siblings, Sandra Harris found that developmentally appropriate information could buffer the negative effects of a potentially stressful event (Harris, 1994).
  2. Siblings need developmentally appropriate and ongoing information about their siblings’ autism spectrum disorder. Anxiety is most frequently the result of lack of information. Without information about a siblings’ disability, younger children may worry about catching the disability and/or if they caused it. The young child will only be able to understand specific traits that they can see like the fact that the sibling does not talk or likes to line up their toys. School aged children need to know if the autism will get worse, and what will happen to their brother or sister. Adolescents are anxious about the future responsibility and impact of the disability on their future family.
  3. Siblings need parental attention that is consistent, individualized, and celebrates their uniqueness. Many families make a major effort to praise and reward the child with the disability for each step of progress. This same effort should be considered for the siblings even if an accomplishment is somewhat “expected.” Self-esteem is tied to this positive recognition by parents. Remember to celebrate everyone’s achievements as special.
  4. Siblings need time with a parent that is specifically for them. Schedule special time with the sibling on a regular basis. Time with the sibling can be done in various ways such as a 10-minute activity before bed each night or a longer period of ½ hour to an hour 3-4 times a week. The important thing is to have some specific times with a parent that siblings can count on having just for them.
  5. Siblings need to learn skills of interaction with their brother or sister with an autism spectrum disorder. Sandra Harris & Beth Glasberg (2003) offer guidelines for teaching siblings necessary play skills to interact successfully with their brother or sister with an autism spectrum disorder. It is important to go slow and generously praise the sibling for his or her efforts. Toys and activities should be chosen that are age appropriate, hold both children’s interest, and require interaction. The sibling needs to be taught to give instructions as well as prompts and praise to their brother or sister (Harris & Glasberg, 2012).
  6. Siblings need to be able to have some choice about how involved they are with their brother or sister with an autism spectrum disorder. Be reasonable in your expectations of siblings. Most siblings are given responsibility for their brother or sister with a disability at one time or another. Show siblings you respect their need for private time and space away from the child with the disability. Make every effort to use respite services, community recreational programs, and other available supports so that you are not overly dependent on the sibling.
  7. Siblings need to feel that they and their belongings are safe from their brother or sister with ASD. Some children with an autism spectrum disorder can be destructive and hard to redirect. They can also be quick to push, bite, or engage in other challenging behaviors with the sibling as a target. Siblings must be taught how to respond in these situations. Generally, this would include asking a parent for help in handling the situation. Parents should make every effort to allow siblings a safe space for important items and a safe retreat from their siblings’ aggressive behaviors. Thomas Powell and Peggy Gallagher offer ideas on teaching basic behavior skills to siblings (Powell & Gallagher, 1993).
  8. Siblings need to feel that their brother or sister is being treated as “normal” as possible. Explain differential treatment and expectations that apply to the child with a disability. As they mature, siblings can better understand and accept the modifications and allowances made for the brother or sister with a disability. For various reasons, parents sometimes do not expect their child with an autism spectrum disorder to have chores and other responsibilities around the house. Attempts should be made to make each child’s responsibilities and privileges consistent and dependent on ability. Be careful not to underestimate the ability of the child with an autism spectrum disorder.
  9. Siblings need time to work through their feelings with patience, understanding, and guidance from their parent(s) and or a professional, if appropriate. Listen and acknowledge that you hear what is being said. Validate the sibling’s feelings both positive and negative as normal and acceptable. Repeat back what you have heard the sibling say and check for accuracy. Sharing your positive and negative emotions appropriately is also important. Remember parents are important models of behavior. Help siblings learn ways to cope with and manage their emotions.
  10. Siblings need opportunities to experience a “normal” family life and activities. If needed, draw on resources in the community both informal and formal. Some families are uncomfortable asking for help. For the sake of everyone in the family, it is important to find and use resources available such as respite care services and other community programs for persons with disabilities and their families. Most families would be overwhelmed without some breaks from the ongoing demands of caring for children with a disability. Siblings and parents need opportunities for activities where the focus of energy is not on the child with special needs.
  11. Siblings need opportunities to feel that they are not alone and that others understand and share some of the same experiences. Parents should recognize the need for siblings to know that there are others who are growing up in similar family situations with a brother or sister with a disability. Opportunities to meet other siblings and/or read about other siblings are very valuable for most of these children. Some children might benefit from attending a sibling support group or a sibling event where they can talk about feelings and feel accepted by others who share a common understanding while also having opportunities for fun.
  12. Siblings need to learn strategies for dealing with questions and comments from peers and others in the community. Parents should help prepare siblings for possible reactions from others toward their brother or sister with a disability. Make sure the sibling has facts about autism spectrum disorders. Discuss solutions to possible situations. They may even benefit from carrying their own information card about autism, for friends and situations in which they can hand out as needed.
Siblings have a unique bond with each other that is usually lifelong. Having a sibling with a disability influences this bond and will affect each sibling differently. The information presented here highlights some of the limited research and the most significant factors influencing a positive experience for siblings of a child with a disability. As a parent of a child with an autism spectrum disorder, you can directly influence and support positive relationships for siblings. Just as you have learned to be proactive for the sake of yourself and your child(ren) with an autism spectrum disorder, siblings need you to be proactive in helping them, too.


Feiges, L.S. & Weiss, M.J. (2004). Sibling stories: Reflections of life with a brother or sister on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company.
Johnson, J. & Van Rensselaer, A. (2010). Siblings: The autism spectrum through our eyes. Philadelphia, PA:  Jessica Kingsley Publishers.
Tucker, S. (2017). Autism in my family: A journal for siblings of children with autism. Philadelphia, PA: Jessica Kingsley Publishers.
Autism Speaks Family Support Tool Kit:  A Siblings Guide to Autism. Retrieved 3/27/19 from
Organization for Autism Research: Autism Siblings Initiative Materials:
Autism, My Sibling, and Me. Retrieved 3/27/19 from
Life as an Autism Sibling: A Guide for Teens. Retrieved 3/27/17 from
Brothers, Sisters, and Autism: A Parent’s Guide. Retrieved 3/27/19 from
Sibling Support Project Website:


Harris, S.L. (1994). Siblings of children with autism: A guide for families. Bethesda, MD: Woodbine House.
Harris, S.L. & Glasberg, B.A. (2003). Siblings of children with autism: A guide for families. (2nd ed.) Bethesda, MD: 2003.
Lobato, D.J. (1990). Brothers. Sisters, and special needs; Information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore, MD: Paul Brookes Publishing Co.
McHale, S.M., Sloan, J., & Simeonsson, R.J. (1986). Sibling relationships of children with autistic, mentally retarded, and nonhandicapped brothers and sisters. Journal of Autism and Developmental Disorders, 23, 665-674.
Powell, T.H. & Gallagher, P.A. (1993). Bothers & sisters: A special part of exceptional families. (2nd ed.) Baltimore, MD: Paul Brookes Publishing Co.

Wheeler, M. (2019). Siblings perspectives: Some guidelines for parents. Retrieved from

Monday, October 7, 2019

1102 Task Force Update

September 24, 2019

2019 National Survey on Health and Disability

We want to know how your access to health care and insurance may be affecting your life.

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about health insurance and health care services. Whether you have private insurance, insurance from an employer, TRICARE, Medicaid, Medicare or no insurance right now please complete the survey.
·      Adults, 18 and over, with any type of disability, chronic illness/disease, mental or physical health condition are encouraged to participate 
·      The survey should take about 20-30 minutes to complete
·      Responses are anonymous 
To complete the survey, to go:
Whether or not you complete the survey, you can choose to enter a drawing to win one of ten $100 gift cards. If you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email healthsurvey@ku.eduThis survey may look familiar to you. It was first posted in 2018 and is being posted for a second time this year. We welcome participation from those who completed it in 2018 and those who have never done it before. Thank you!
- Noelle Kurth, NSHD administrator
For questions about the survey or if you are having difficulty with the survey's online format, please respond to this email OR call toll-free Monday-Friday 8 am - 4pm Central time, 1-855-556-6328.