PHLP’s Advocacy Gets In-Home Services for Teenager with a Rare Genetic Disease
In recent months, PHLP was asked to help a 19-year-old woman, “Valerie,” from Central Pennsylvania obtain long term services so she could remain in her home. Valerie has tuberous sclerosis
, a rare genetic disease that causes tumors to grow in the brain and on other vital organs. Her symptoms are particularly severe and include uncontrollable seizures, kidney failure, chronic hip problems, and cognitive impairments; however, with appropriate medical care and supports in the home she enjoys and benefits from a loving and caring relationship with her mother and father.
Valerie’s parents realized that if she was to remain at home they needed housing modifications and other support services. The family applied for a program, known as the Independence Waiver, that provides medical and non-medical services and supports to individuals with disabilities so that they can remain in their homes and community. But, their request was denied because the state challenged Valerie’s primary diagnosis, despite clear evidence supporting tuberous sclerosis.
PHLP filed an immediate appeal challenging the denial. A month later the Commonwealth reversed its denial of services, and admitted Valerie into the waiver program. The long awaited process toward accessing the care she so desperately needs is now under way! Valerie’s case shows that in-home long term care services do not come easily, even to the most vulnerable. PHLP works across the state on behalf of vulnerable persons that need care but lack the resources to receive meaningful representation.
PHLP Testimony Supports a Pennsylvania-Operated State Health Insurance Exchange
The Affordable Care Act (ACA) requires states to set up their own health insurance exchanges
or to utilize an exchange created by the federal government to help individuals and small businesses access quality health insurance. Last month, the Pennsylvania Health Law Project delivered testimony at a statewide forum sponsored by the Pennsylvania Insurance Department supporting a Pennsylvania-operated exchange. PHLP’s remarks suggested policies and practices to make the exchange work for Pennsylvanians. To read PHLP’s oral and written testimony click here
PHLP also worked with other organizations on principles that will help consumers’ ability to access quality, affordable health insurance. With the Pennsylvania Health Access Network, PHLP co-authored a position statement
that outlines recommendations for a Pennsylvania-run Exchange. PHLP also co-authored a set of principles
focused on children and the impact of an Exchange on their coverage, access to care, and quality measures.
PHLP Measuring Impact of Medicaid Co-Payments for Children with Disabilities
As part of the 2011/12 Pennsylvania budget, the Department of Public Welfare (DPW) is asking families of children with disabilities to pay a larger share of their income to finance health care, and initiated plans to charge co-payments for Medicaid (MA) services. Children with disabilities covered by MA in the PH-95 category (sometimes called "loophole" or "family of one") whose family income is more than 200 percent of the federal poverty level (about $45,000 a year for a family of four) are likely to see new co-pays. DPW is still deciding how to implement the co-payments.
PHLP does not want children to lose physical, behavioral, developmental, dental, speech, occupation, physical and other therapies because they cannot afford the co-payments for services, and is working with several advocacy organizations to show DPW what families spend out-of-pocket now for their children's care and treatment and what the impact of co-payments might look like. PHLP designed a survey for families of children or youth under age 21 who are:
Covered by Medicaid in the PH-95 category, and
Whose family income is more than 200 percent of the federal poverty guidelines
Summaries of the collected information will be shared with DPW. The survey can be accessed until the end of this month at http://www.surveymonkey.com/s/S7JLQ88
. Questions may be directed to Ann Bacharach
, Special Projects Director.
The Pennsylvania Health Law Project is a nationally recognized expert and consultant on access to health care for low-income consumers, the elderly, and persons with disabilities. PHLP engages in direct advocacy on behalf of individual consumers while working on the kinds of health policy changes that promise the most to the Pennsylvanians in greatest need.