A study published in the journal Pediatrics examines the costs of family caregiving for children with special health care needs (CSHCN). There are about 5.6 million CSHCN in the U.S. who receive a total of 1.5 billion hours of uncompensated family care. Replacement with home health would cost approximately $35.7 billion, an average of $6,400 per child. The cost in forgone earnings for caregivers was about $17.6 billion or $3,200 per child.
The Senate is expected to vote on Wednesday, January 11 on a budget resolution that would begin the process of repealing the Affordable Care Act (ACA). See article above for more information and take action!
The House may also begin a series of votes this week on a reconciliation bill to repeal the ACA, starting in the Rules Committee. The House bill is expected to include language defunding Planned Parenthood which could result in loss of support in the Senate.
On January 4, the Senate approved, with a nearly party line vote of 51 to 48, a procedural motion to move ahead with a fiscal year 2017 budget resolutionintroduced the day before that is intended to repeal the Affordable Care Act (ACA) and may result in other harmful provisions for people with disabilities. The measure provides “reconciliation instructions” to four authorizing committees so that repeal legislation can move through a fast-track process and can advance with only a simple majority in the Senate instead of the usual 60 votes required:
- House Ways and Means
- House Energy and Commerce
- Senate Finance
- Senate Health, Education, Labor, and Pensions
Each of these committees is charged with developing legislation to achieveat least $1 billion in deficit reduction over 10 years (fiscal years 2017 through 2026) to submit to their proposals respective Budget Committees by January 27, 2017. These instructions are intended to produce repeal of parts of the ACA that impact mandatory spending or revenue such as the individual mandate to have health insurance, federal subsidies to purchase health insurance, funding for Medicaid expansion, and various taxes that help fund the ACA. However, since the instructions are broad, the resulting legislation could include other provisions that will cut federal spending such as block granting the Medicaid program.
The Senate began to debate the budget resolution and is expected to continue working on amendments this week. Congressional leaders have stated their intent to have the budget resolution adopted by both chambers by Jan. 20, when Donald Trump will be sworn in as president.
Congressional leaders are laying the groundwork for a rapid repeal of the Affordable Care Act (ACA) beginning on the first day of the new Congress, before President-elect Donald Trump is even sworn in. It appears they are seeking to repeal the ACA without developing a replacement plan. The Arc urges all advocates to begin early and sustained action to protect the ACA and its many protections and benefits for people with disabilities. We will be sending materials soon in support of our advocacy campaign.
Last week the House of Representatives passed the 21st Century Cures Act (H.R. 34) by a wide margin (392-26). The bill would provide additional funding for medical research at the National Institutes of Health, speed up the approval of treatments at the Food and Drug Administration, and help combat opioid abuse, among other provisions. It also incorporates the “Helping Families in Mental Health Crisis Act” which makes numerous changes to the mental health system. Additionally, it incorporates the Special Needs Trust Fairness Act, which allows non-elderly individuals with disabilities to establish a special needs trust on their own without having to file a petition with a court. However, the bill contains some controversial provisions such as one requiring states to use an electronic visit verification system for Medicaid-provided personal care services and home health services. Furthermore, it takes $3.5 billion from the Prevention and Public Health Fund to help pay for the cost of the bill. The Senate is expected to vote on the bill this week.
If you are uninsured or searching for affordable health insurance, now is the time for you to look. During “open enrollment” you can purchase private health insurance through the marketplace in each state. Depending on your income, you may be eligible for assistance with your health insurance costs. Despite calls for the repeal of the law, people can still purchase health insurance until the law is repealed or major changes are made.
If you currently have insurance through the marketplace, you should look at your current plan and determine if it will continue to meet your needs, or select a better plan. If you do not take action, you will be automatically re-enrolled in your current plan or a similar plan. You should carefully review all health insurance notices and updates. Re-enrollment provides an important opportunity to report any changes to your income. If your income has increased, reporting changes to the marketplace may help you avoid paying future penalties. The key dates for the 2017 open enrollment period are:
- November 1, 2016–open enrollment begins
- December 15, 2016–enroll before this date to have coverage January 1, 2017
- January 31, 2017–Open enrollment ends
On September 21, 2016, Senator Ron Wyden (D-OR) and Representative Frank Pallone (D-NJ) have introduced the Medicare Affordability and Enrollment Act of 2016 (S.3371/H.R.6109). This bill would make several improvements to Medicare, such as establishing maximum out-of-pocket costs, increasing eligibility for premium and cost-sharing subsidies, eliminating the 2-year waiting period for Disability Insurance beneficiaries, and reducing late-enrollment penalties. The Arc supports this legislation.
HHS has issued a guidance document that details how to properly administer the Minimum Data Set (MDS) to ensure that nursing facility residents are afforded the right to return to community living. The MDS is a mandated quarterly assessment administered to all nursing home residents. It includes questions that can connect long term care residents with opportunities to live in the community. The document asserts that the MDS is often improperly administered, meaning that in practice, most long term care facilities are not adequately implementing plans to transition residents to more integrated settings. This document details how to avoid many common misapplications of the MDS.
On July 6, the House passed the Helping Families in Mental Health Crisis Act (H.R.2646) by a vote of 422-2. Provisions of interest to The Arc were largely unchanged from the version approved by the Energy and Commerce Committee. The Senate is currently working on its own bill, the Mental Health Reform Act of 2016 (S.2680).
On June 22, Speaker of the House Paul Ryan (R-WI) unveiled his plan to replace the Affordable Care Act and fundamentally restructure the Medicaid and Medicare programs. The proposal is not a detailed legislative draft, but a blueprint for expected action in the next Congress. The proposal provides states the option to choose a block grant for the Medicaid program or a per capita cap. A block grant provides a set amount of federal spending regardless of enrollment. A per capita cap does adjust for enrollment while establishing a limit on how much to reimburse states per enrollee. Either option is a fundamental restructuring of Medicaid financing with the goal of achieving federal savings. If costs are above per enrollee amounts, the states would need to cover the costs or make cuts to provider reimbursement, eligibility, or services, or shift costs to individuals receiving services or their family members. The plan proposes to give states additional flexibility to increase cost sharing, add waiting lists, and limit benefits. Additionally, the plan proposes to add a work requirement to the Medicaid program, end the option to expand Medicaid, and phase out the increased federal match for the states that have already expanded Medicaid. The Arc is very concerned about the impact of these major changes on people with disabilities and their family members and will continue to provide input to Congress about these proposals.