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Advocacy Results


Support for Family Caregivers in Virginia

Each year, MS activists urge Congress to continue funding the Lifespan Respite Care Program. Since 2009, thirty states and the District of Columbia have received grants to establish or enhance programs that better coordinate and deliver quality respite services to our nation’s more than 60 million family caregivers. State grantees have made great strides, with some running awareness campaigns and others establishing statewide databases of available respite care. Some states—like Virginia—have started providing vouchers to families to choose and purchase quality respite care.  
Ray Heron’s wife Pam has MS and has needed round-the-clock care since the late 1990s. During weekdays, Ray spends about three hours each morning and four hours each evening caring for Pam. While he is at work, Medicaid fortunately covers a certified nurse assistant to feed Pam breakfast, lunch and dinner, and manage her other needs including positioning to avoid pressure sores. 
Ray and Pam were excited when, through his volunteerism with the Society, Ray heard about Virginia’s Lifespan Respite Voucher Program. Ray called the agency that provides Pam’s care and discovered that the vouchers would fill the gaps in Pam’s Medicaid-paid care for up to three days. Ray and Pam applied and were approved for a voucher, which enabled Pam to have the support she needs and Ray to visit his parents—a six-hour drive away—who he hadn’t been able to see in years. 
Ray is proud to call himself a family caregiver and happily points out a priceless benefit: “I still get to spend every day with Pam.”

Connecticut 2014 Legislative Session Update

The National MS Society advocates at the federal, state and local levels for increased MS research, access to quality care, disability rights, long-term services and supports and awareness and organizational support.  In Connecticut, MS Activists worked on issues that impact people living with MS including improving access to energy assistance and utility shut-off protections, strengthening consumer protections related to access to medications and pharmacy rebate programs and increasing the availability of homecare and medical equipment.

The National MS Society, Connecticut Chapter was responsible for organizing and coordinating 35 testimonies at public hearings and forums during the 2014 Legislative Session. We issued five email Action Alerts to our MS Activist Network. One hundred fourteen people attended MS Action Day on March 4, 2014 at the Connecticut State Capitol.

1.   Legislative Priority: Home and Community Based Services

General Assembly Bill No. 5597, AN ACT IMPLEMENTING PROVISIONS OF THE STATE BUDGET FOR THE FISCAL YEAR ENDING JUNE 30, 2015. Signed by Governor Malloy on June 13, 2014.

Connecticut Home Care Program for Adults with Disabilities

The 2015 state budget includes increasing the size of this critical pilot program. Effective July 1, 2014, 50 additional slots will be added to the program, with a funding increase of $600,000.

The Connecticut Home Care Program for Adults with Disabilities (CHCPAD) is a pilot program that provides home-based services to people age 18–64 with degenerative neurological conditions who are at risk of being institutionalized in nursing homes. CHCPAD now serves 50 individuals throughout the state, including those with multiple sclerosis, ALS, Alzheimer’s, Parkinson’s and Huntington’s diseases. Effective July 1, 2014, 100 individuals will receive services.

2.   Legislative Priority: Transparency in Consumer Notification

SB 208, AN ACT CONCERNING PHARMACY REWARDS PROGRAMS AND PROTECTED HEALTH INFORMATION. This bill passed the Senate and the House and was signed by Governor Malloy on June 12, 2014.

This bill requires that before a consumer registers for a pharmacy rewards program, the retailer must give the consumer a plain language summary of the terms and conditions of the rewards program. This includes if the consumer is required to sign a HIPPA authorization form to participate in the rewards program. The retailer must also include how the information will be used, whether it will be disclosed to a third party, and if it is disclosed that the information will not be protected by federal or state privacy laws. The terms must also include who will have access to the consumer’s protected health information, how to revoke the HIPPA authorization and that the consumer is entitled to have a copy of the HIPPA form.

3.   Legislative Priority: Improved Access to Pharmaceuticals

SB 394, AN ACT CONCERNING REQUIREMENTS FOR INSURERS' USE OF STEP THERAPY. This bill was signed by Governor Malloy, June 6, 2014.

The bill requires that insurance companies provide and disclose that a process exists whereby providers can request an “override” when insurers require a step therapy protocol before covering an expensive prescription drug.

The insurer must expeditiously grant an override if a provider demonstrates that the drug regimen required under step therapy (1) has been ineffective for treating the insured's medical condition; (2) is expected to be ineffective based on the insured's known relevant physical or mental characteristics and the known characteristics of the drug regimen; (3) will or will likely cause an adverse reaction by, or physical harm to, the insured; or (4) is not in the insured's best interest, based on medical necessity. If the insurer grants an override, it must authorize dispensation of, and coverage for, the drug prescribed by the provider, as long as it is covered under the insurance policy or contract.

4.   Legislative Priority: Access to Medically Necessary Items and Services

Medicaid Custom Wheelchair Regulations

The Connecticut Department of Social Services was scheduled to implement new regulations for Medicaid coverage of customized wheelchairs. The proposed regulations were limiting and removed the words “independence” and “powered”.  Members of the chapter’s Clinical Advisory Committee submitted comments opposing the re-wording of the regulations because of the potential to uphold a denial of a custom power wheelchair for individuals on Medicaid. MS Activists attended and testified at the public forum on the topic. The chapter arranged for two people with MS who live at Branford Hills Health Center, who were initially denied power chairs under this change in regulation, to attend the March 31, 2014 meeting.

As a result of these and the efforts of hundreds of other activists around the state, the Department of Social Services has formed a consumer advisory council for the implementation of the regulations.

5.   Legislative Priority: Promote Access to Programs to Help Ameliorate Financial Burdens

Utility Shut off Protection


This bill was going to change the definition of who could receive medical protection to avoid shut off of their utility service. The proposal aimed to change the definition of serious illness to be one that was focused on life threatening conditions. The Society testified in opposition to the bill. We were part of meetings with AARP, Legal Aid and others who met with a number of the utility companies around this issue. The utilities agreed to withdraw the bill and to form a work group around the issue. The chapter will be involved with this group.

Year-round Energy Assistance: State Funding for Operation Fuel

Individuals with MS can suffer from heat sensitive and heat will aggravate MS symptoms in 80% of those living with MS. The worsening of symptoms can be relieved by cooling. Access to year-round energy assistance makes a substantial difference in the lives of individuals for whom air conditioning is not a mere luxury, but a medical necessity.  In Connecticut, state and federal funds only cover the costs of winter heating for low income residents. There are no government programs to assist families with keeping the lights on, maintaining hot water for bathing, refrigeration or cooling.  Operation Fuel is the only source of year-round energy assistance.

MS Activists testified and advocated for state funding and the final FY 15 state budget includes $2.1 million for Operation Fuel.


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