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Amendments to the Small Employer Health Benefits Program Dear Ms. DeRosa, I am writing regarding the proposed amendments to the Small Employer Health Benefits Program. I am a parent of a special needs child and volunteer advocate for two national organizations. I am NJ state and MCH region II (NJ, NY, PR, VI) Coordinator for Family Voices, a grassroots organization speaking on behalf of children with special health care needs. I am also the NJ Caregiver Community Action Network representative for National Family Caregivers Association. NFCA is for all caregivers: parents of special children, “well-spouses”, and those involved in elder care. I became an advocate after struggling with medical and educational issues with systems that were supposed to be helping my daughter. My daughter Stephanie has kidney disease and autism; I personally will not be affected by the proposed legislation but am speaking on behalf of other families. First, we are concerned about the reduction of benefits in home nursing. It is good to see that those families requiring constant care will be “grandfathered” in. However, a reduction to a 60-visit limitation will not aid family members requiring continuous care. The Medicaid “Katie Beckett” waivers demonstrated that it is mutually beneficial to keep family members at home; it is cheaper than institutional care, it is better for the family member resulting in better health outcomes, and keeps the family together. In addition, the reduction of private duty nursing care to 360 hours per year will have a similar detrimental effect on families. We are also concerned with the further reduction of physical, occupational, and speech therapies from the already insufficient 60 days, to 30 days. As an advocate, I’ve had insurance company representatives tell me they cover rehabilitative therapies for adults, not habilitative therapies for children, which may be considered educational or developmental in nature. For example, insurers have stated that they may not cover physical therapy for a child with cerebral palsy or spina bifida to learn to walk, or speech therapy/sign language for a child with hearing impairment, even though there is a medical cause, because it cannot be proven the children would have been able to walk, or communicate, in the first place. In other words, they would cover similar physical therapy services for an adult who had been in a car accident to walk again, or speech therapy for an adult stroke victim, to regain lost skills. One mother of a child with a long-term terminal illness was told by an insurance representative over the phone that “therapy would not be provided for her son because he was going to die anyway”. In addition, even if insurers cover therapy, it may be limited to a certain period of time or number of visits. How are children going to get these skills? We were please to see the addition of coverage for biologically-based mental illness. Although we mostly deal with physical illness, I’ve seen a tremendous increase in calls regarding mental health issues. We’ve worked closely with both the Children’s Initiative state program and the NJ Parents’ Caucus on these issues. We are concerned that also that some of these limitations will cause further problems for already stressed families. I’ve had parents call me because they had to quit their jobs and go on welfare in order to get Medicaid because it was the only way they could get services for their child. We urge you to consider these concerns on behalf of families. Your attention to this matter is greatly appreciated. Thank you for your time and consideration. Sincerely, Lauren Agoratus National Family Caregivers Association-NJ Family Voices NJ, NY, PR, VI 35 Kino Blvd. Mercerville, N.J. 08619 BACK |