Latest Issues

U.S. Senate Rejects Bill that would Repeal and Replace the ACA

In the early morning hours of July 28, 2017, the U.S. Senate rejected a “repeal and replace” bill for the Affordable Care Act.

This bill along with others that were introduced were harmful to Medicaid services that most individuals with intellectual and developmental disabilities must have.  In the end, it was fortunate that the bill did not pass.

We were grateful that Senator Marco Rubio had his staff visit several of our chapters to better understand the use of Medicaid funds in this population, however, in the end he did vote to support the bill.

Senator Bill Nelson wrote several of us asking us to watch a speech he had made against the legislation and in the end he voted against the bill.

We have to continue to guard against cuts and changes to the Medicaid system which will negatively impact the quality of life for the individuals we serve.

This isn’t politics…it’s advocacy!


The Arc on Motion to Proceed in Senate: “All roads from this vote are bad for people with intellectual and developmental disabilities”

Washington, DC – The Arc released the following statement on Senate passage of a motion to proceed that starts debate on health care legislation that will impact Medicaid:

“Today, a majority of Senators ignored the pleas of their constituents and moved ahead with debating disastrous health care proposals that will result in people losing health care coverage and threaten the Medicaid home and community based service system.

“All roads from this vote are bad for people with intellectual and developmental disabilities. One path repeals without replacing the Affordable Care Act. The Congressional Budget Office analysis showed that under that proposal, by 2026, 32 million people would lose health insurance and premiums would double.

“Another option decimates the Medicaid program, and the home and community based supports and services that people with disabilities rely on to do what many people take for granted, including getting out of bed in the morning, eating, toileting, and simply getting out into the community.

“Now is the time for action – it doesn’t matter if this is the first time someone is calling their Senators, or they’ve called them every day in this fight. This is the civil rights fight of our time, and we will remain vigilant to protect all that has been built to ensure the inclusion and equality of people with intellectual and developmental disabilities in our society,” said Peter Berns, CEO, The Arc.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.


Tell Washington to Vote NO to Devastating Cuts to Medicaid

Tell Washington to vote no to devastating cuts to Medicaid.

Call Senator Marco Rubio
Phone: 202-224-3041

Call Senator Bill Nelson​
Phone: 202-224-5274

Tell them who you are and tell them the cuts are too harmful to persons with intellectual and developmental disabilities.

Congress is moving fast to deeply cut and cap Medicaid. The proposed cuts are putting Medicaid’s “optional” and “waiver” benefits at risk.

Medicaid law requires that all states provide services such as doctor visits, hospitalization, nursing home care, and others. Other critical services for people with disabilities are not required by law (i.e. optional benefits) but are allowed if the state chooses to provide them and follows federal requirements.

What are Optional Benefits?

The federal/state Medicaid program allows states to provide a wide variety of optional services in addition to the mandatory services. Once a state includes an optional service as part of its state plan, benefits must be about the same, available throughout the state, and people get to choose their providers and plans. States provide many different services and supports as optional benefits, such as:

  • Prescription Drugs
  • Clinic services
  • Physical therapy
  • Occupational therapy
  • Speech, hearing and language disorder services
  • Respiratory care services
  • Other diagnostic, screening, preventive and rehabilitative services
  • Dental Services
  • Prosthetics
  • Eyeglasses
  • Private duty nursing services
  • Personal Assistance services
  • Case management
  • Services in an intermediate care facility for Individuals with Intellectual Disability (ICF/ID) – This includes some large institutions and many large and small group homes that meet federal requirements.
  • “State plan” Home and Community Based Services – Typically includes services like respite, case management, supported employment, and environmental modifications. States using this option include: California, Colorado, Connecticut, Delaware, District of Columbia, Idaho, Indiana, Iowa, Louisiana, Maryland, Mississippi, Montana, Nevada, Oregon, Texas, and Wisconsin.
  • Self-Directed Personal Assistant Services – Provides personal care and related services and participation in self-directed PAS is voluntary. Participants set their own provider qualifications, train their PAS providers, and determine how much they pay for a service, support, or item.
  • Community First Choice Option- Allows States to provide comprehensive home and community-based services and supports under the State Plan as an alternative to facility based care and receive increased federal matching funds. States using this option are California, Maryland, Montana, Oregon, and Texas.
What about “Waiver” Services? Are These Optional?

Waiver services are in a category of their own as states must submit formal requests to have certain federal Medicaid requirements waived and negotiate those changes with federal officials at the Centers for Medicare and Medicaid Services. Waivers require periodic renewals which usually trigger new negotiations.

While waivers offer states a lot of flexibility, they permit states to limit services by permitting states to provide benefits only to specific groups (for example, children with autism) and to cap enrollment (for example, 200 children). This is why there are long waiting lists for many waiver services in states throughout the country.

The most important waiver for people with I/DD is called the 1915(c) Home and Community-based Services Waiver. States have a variety of different names for the waiver. States use this waiver to provide long term supports and services in home and community settings rather than institutional settings. Waiver services include:

  • providing direct support professionals to assist with meals, bathing, dressing, and toileting
  • habilitation
  • communication support
  • assistive technology
  • supported employment
  • behavioral supports
  • services that may assist in diverting and/or transitioning individuals from institutional settings into their homes and community
  • numerous other services
The Bottom Line

Optional and waiver services would be under attack if Congress deeply cuts and caps Medicaid funding. This means that, depending on state responses to lost federal funding, people with intellectual and developmental disabilities (I/DD) are at risk for losing access to community-based supports and states may increase use of institutionalization.