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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.”

National MS Society, Connecticut Chapter
2015 Legislative Session and Public Policy Wrap Up

MS activists are on the frontline, moving together and speaking with one clear voice to advance federal, state and community policies and programs that benefit people living with MS and their families.

Thanks to the efforts of our activists we had a number of positive outcomes this year. The National MS Society, Connecticut Chapter, advocated for issues including access to prescription medications, adequate provider networks in health insurance plans, supports for family caregivers, accessible parking, aging in place and long term services and supports.

1.       Access to Prescription Medications

We work to ensure that treatments which are effective for multiple sclerosis and its symptoms are covered by health insurance plans whether they are FDA-approved for MS or used as an off-label treatment for MS.

·        Off-label prescription drugs

Under current state law, when a drug is prescribed off-label to treat cancer or other life-threatening or disabling chronic condition, insurance companies make coverage decisions based on specific reference materials. Two of these materials are out of print. The use of outdated materials threatens access to coverage for prescription medications that may be helpful in treating these conditions. 

The Connecticut General Assembly passed legislation (June Special Session, Public Act No. 15-5) that directs insurance companies to use current peer reviewed medical literature as a reference source when making coverage decisions about a prescription drug that is being used off-label to treat cancer or other disabling or life-threatening disease such as multiple sclerosis. This is important because peer-reviewed literature reflects the newest changes and findings in medical science and clinical practice. This becomes effective in January 2016.

2.       Supports for Family Caregivers

We promote programs that provide support for family caregivers, including training and respite care. Caregivers of people living with MS spend about 24 hours a week providing care. Of these caregivers, 64 percent are emotionally drained, 32 percent experience depression and 22 percent have lost a job due to caregiving responsibilities.

·        The CARE ACT, Public Act 15-32

This new law helps to support unpaid family caregivers when their loved ones transition home from the hospital by:

o   Allowing patients to designate the name of a family caregiver upon admission into the hospital;

o   Providing adequate notice to family caregivers before their loved one is discharged; and

o   Giving family caregivers an opportunity to receive live or video instruction of the after-care tasks included in the discharge plan to be performed by the caregiver.

          The law becomes effective on October 1, 2015.

3.       Accessible Parking

We support legislation that strengthens accessibility and improves options for people with mobility impairments.

·        Snow Removal in Handicapped Parking Spaces

Legislation passed during the Special Session that prohibits a private parking area owner, lessee or his/her agent from dumping, placing, or allowing someone else to dump or place accumulated snow in a handicapped parking spot. Violators face a $150 fine for a first violation, and a $250 fine for each subsequent violation. It is effective October 1, 2015.

4.       Home and Community Based Services  

Society staff worked with the CT Department of Social Services in the development of a new Medicaid benefit that expands the availability of personal care assistant services.  Community First Choice (CFC) is a new program in Connecticut offered to active Medicaid members as part of the Affordable Care Act. This program allows individuals to receive supports and services in their home. These services can include—but are not limited to—help preparing meals, household chores, and assistance with activities of daily living (bathing, dressing, transferring, etc.). CFC is open to any Medicaid member that can self-direct services and meets Institutional Level of Care. Institutional Level of Care means you would likely need to be in an institution, such as a nursing home, if you did not have home and community based services. This program allows an eligible person to have care and support in their home. The service became available on July 1, 2015. More info is available at https://www.ctmfp.com.

Legislation and Issues that we will continue to fight for include:

·        Network Adequacy

We work to ensure that health insurance plans develop and maintain provider networks which provide coverage and access to quality MS care.

·        Aging in Place

We believe that as more people choose to age in place, and as people with disabilities face challenges of functioning independently in their homes, impediments to living safely in our communities must be removed. People with multiple sclerosis, older adults and others with disabilities need the resources and funding necessary to increase the accessibility of their homes.

If you want to be a part of this exciting work, join the MS Activist Network. By joining, you will receive updates on federal, state and local policy impacting people affected by MS. We’ll also send you MS Action Alerts when an issue or piece of legislation calls for your immediate attention and action. With a few easy clicks, you can send emails to your public officials about why a current issue is important to you.

http://main.nationalmssociety.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=36706

For more information contact Susan Raimondo, 860-913-2550, susan.raimondo@nmss.org.

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