Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Let's try this again!!!! Subject: MA ALERT UPDATE - MARCH 15, 2002 (Identical Word Doc Attached, Formatted for Easier Read) Date: Mon, 18 Mar 2002 16:44:24 -0500 Governor of Pennsylvania's 2002-2003 Budget Proposal to ELIMINATE MEDICAL ASSISTANCE BENEFITS for SOME CHILDREN with DISABILITIES was Defended by Secretary of the Department of Public Welfare, Feather Houstoun, during Senate and House Appropriations Committee Hearings with Inconsistent Testimony describing Nonexistent Programs The Governor's Budget proposes to tie parents' income to eligibility for Medical Assistance (MA) for children with disabilities. Currently, household income is not counted for MA if a child is determined to have a severe disability. Under the proposal, families of 4 who have children with disabilities whose household incomes are $100,000 or more, would be INELIGIBLE for Medical Assistance! Presumably, the income limit would be lower for families of 3 or less, and higher for larger families. The State would NOT consider medical expenses or other expenses related to the child's disability. This cut could go into effect as soon as July of this year. (See PA HealthLaw Bulletin below.) During the Appropriations Committee Hearings the Department of Public Welfare (DPW) Secretary, Feather Houstoun, REPEATEDLY testified that even WITH this proposal, Pennsylvania would continue to be the MOST generous state in the United States to children with disabilities. She said Pennsylvania had eligibility requirements for all other medical assistance programs limiting participation to households with incomes no greater than $40 thousand. No one should refrain from involvement because the MA cuts will not immediately impact upon their child's services. We strongly believe this is just the FIRST STEP in CLOSING the " Loophole " altogether. The appropriations committee hearings were the only forum that allowed the public to attend the debate on this issue. ANY DISCUSSION OR DECISION on this proposal from this point forward TAKES PLACE BEHIND CLOSED DOORS. Medical assistance benefits to children with disabilities will reappear as one small line item in the state's $18 billion DPW budget. The entire state budget is then either accepted or rejected in June 2002. Our Governor, State Senators and Representatives MUST be contacted regarding the proposed changes to medical assistance for children with disabilities. They are unaware of the devastating and far reaching effects this change would have on their constituents. Unless YOU make them aware of your concerns, this proposal will pass. This year, PA faces tight budget constraints due to the downturn in the economy and many citizens and special interest groups are also contacting legislators regarding OTHER budget issues. We must join together to ensure that our concerns are heard and to make legislators aware that UNITED SUPPORTERS of ALL CHILDREN ACROSS DISABILITIES is a large group and a force they must recognize. Remember the saying, " The squeaky wheel gets the oil. " The proposal to cut MA benefits not only affects children with disabilities and their families, but it would also place a tremendous strain on our SCHOOLS as they would no longer receive state reimbursements and matching federal funds for speech and language, occupational and physical therapies for children without MA benefits. When questioned about the effects this proposal would have on schools and the increases it could cause in PROPERTY TAXES DPW Secretary Feather Houstoun testified that she was concerned with HER budget. If you would like to join the alliance of " UNITED SUPPORTERS of ALL CHILDREN ACROSS DISABILITIES " we welcome you! It is our goal for every state senator and representative to hear concerns regarding this proposal from their OWN constituents through our statewide network. Please read on for specific steps you can take to support ALL children across disabilities and their families, for tips on calling and writing legislators and for examples of letters already sent to state officials. It is important you let us know whom you have contacted in order for us to update the " Statewide Officials Contact List " AND for us to keep YOU updated on the NEXT STEP our united alliance will take as the budget process moves forward to the vote in June 2002. STEPS TO TAKE TO SUPPORT MA BENEFITS FOR ALL CHILDREN WITH DISABILITIES & JOIN WITH THE UNITED SUPPORTERS of ALL CHILDREN ACROSS DISABILITIES 1. MOST IMPORTANTLY, write a letter to the Governor, your State Senator & State Representative IMMEDIATELY. Individually written letters (your personal story) have a much stronger impact than form letters. Sending letters by mail or fax is more effective than email! 2. Contact your County Commissioners, City Council Members & Township Supervisors. Contact your School Superintendent, School Board Members & Intermediate Unit Executive Director. Inform them of the proposed change, its effect on disabled children and their families and the potential impact this proposal could have on the school district and increases it could trigger in property taxes! 3. Forward this message to everyone (parents, family, friends, doctors, nurses, therapists, teachers, etc.) who supports the continuation of medical assistance for children with disabilities as it currently stands and ask them to also contact officials and send letters. 4. PLEASE CONTACT AND SEND LETTERS TO GOVERNOR AND LEGISLATORS PRIOR TO APRIL 1ST! A parent group representing children across all disabilities is meeting with the Secretary of the Budget in April and it would be great if your legislators know of your concerns before this meeting. If you don't get the opportunity to make contact before that date, continue to meet, call and send letters through May 2002. 5. To make the strongest impact on officials request a face-to-face meeting. Hand deliver your letters at these meetings. We are asking United Supporters of ALL Children ACROSS Disabilities to wear GREEN RIBBONS especially when meeting with others to discuss these concerns as a symbol of the life and growth of all children and as a show of alliance support. TIPS ON CALLING & WRITING LETTERS TO GOVERNOR & YOUR LEGISLATORS Remember you are EDUCATING the legislators on your concerns. They have no idea the effects these cuts could have on your child and family. Tell them you are EXTREMELY alarmed and urge them to keep the MA eligibility as it stands for children with disabilities and NOT tie it to household income. Write from the heart and just tell your story. They need to know what this would mean to YOU. It is also a good idea to put a face to the issue. Attach your child's photo to your letter. (See sample letters below.) Ask them to continue to assist families of children with disabilities rather than tear families apart and punish them for trying to care for their children. It is best NOT to use the phrase " Loophole for Disabled Children " because it has negative connotations. Instead use " Medical Assistance for Children with Disabilities. " Send the same letter to the Governor and legislators just changing the envelope and inside address, and greeting, i.e. Dear X. Try to keep your letter to 1 page! If possible Meet or Call AND Write! If your legislator isn't in, speak with an issues person and follow up with a letter stating with whom you spoke. Tell them you're a constituent, your name and who you are (parent, nurse, therapist, etc.). When speaking, refer to them as Governor X, Senator X or Representative X. On the envelope address and inside address refer to them as The Honorable X X X and as Dear Governor X, Senator X or Representative X. Include your address and phone number on letters. Put your return address on the envelope. Some legislators throw out mail that's not from constituents. To figure out who your representatives are go to www.legis.state.pa.us Click on " The House of Representatives " Click on " Find Your Legislators " Click on your County. Click on your community. Click on legislators name for contact info. If you have any trouble, contact us and we will gladly help. The Governor's contact info is: The Honorable Mark Schweiker 225 Main Capitol burg, PA 17120 At Bottom of Governor's Letter write: cc: Mr. A. Bittenbander Secretary of the Budget Make a photocopy of your letter that was addressed and personalized to the Governor and mail it separately to Mr. Bittenbander. Only " cc " the governor's letter! Mr. Bittenbander's contact info is: Mr. A. Bittenbander Secretary of the Budget 225 Main Capitol burg, PA 17120. INFO & TESTIMONY FROM HEARINGS THAT MIGHT HELP IN COMPOSING LETTER Share with your legislators how underinsured your child is due to the limitations in private insurance policies. Give examples of the services your child requires that are not covered by your private insurance and the costs of those services. Remind them that private insurance policies do not cover the astronomical costs of catastrophic illness and that many polices do not include treatment for behavioral and mental diagnoses. Tell them about expenses related to your child's disability that YOU currently provide. Describe out of pocket expenses such as over the counter meds, medical supplies, transportation, general supplies, therapies, educational materials, increased costs of electricity and phone, and the costs associated with additional people in your home. Let them know that children with disabilities would cost the state 2 to 3 times more if institutionalized because their parents could no longer care for them at home. Remind them that care for children with severe disabilities is not optional that it is medically necessary. Tell them you cannot provide this care without help through MA. Explain that if your child looses MA benefits resulting in his/her institutionalization, that MA will have to pick up the cost of institutional care once your child has been out of your home for just ONE MONTH. Ask them why the DPW budget proposes an increase of more that $200 million to the MA managed care companies while reducing the HMOs' responsibilities through termination of MA benefits for children with some of the most significant and costly service needs. The Secretary of the DPW inferred that some children in this program do not have " severe " disabilities. The existing program REQUIRES that children must meet very strict SSI disability standards before they are eligible for this medical assistance program. Once eligible, only those services deemed " medically necessary " are provided. The Secretary of the DPW claimed that children who are at risk of institutionalization would be " taken care of. " Currently, the state of PA has no " Waivers, Special Arrangements or Programs " to cover technology dependent children who are currently in this MA program. In addition, Waiver Programs have a limited number of slots and most Waivers have waiting lists. Ask legislators to demand that programs are put in place to provide for your child BEFORE their benefits are terminated by this proposal. The Secretary of DPW claimed PA's Medicaid Program does more for children with disabilities than almost any other state. Tell them PA is one of few states with NO other programs that could provide these needed benefits to your child. Therefore, they are covered through this MA program. Remind them that PA is NOT a Developmental Disability state with programs that provide services to children on ventilators or with autism, cerebral palsy and other severe disabilities. Developmental Disability states have waivers and programs for children with developmental disabilities which are provided WITHOUT regard to parental income. Ask legislators to demand that programs are put in place to provide for your child BEFORE their benefits are terminated by this proposal. Please send any questions, copies of letters and legislators' reactions to willsworld@... Once your email is received, we will keep you updated and informed on what you can do. You may also contact us at Will's World, P.O. Box 145, Durham, PA 18039. We encourage you to share this info with friends and members of groups to which you belong. If you would like our assistance, please contact us. Thanks for your support! Sherry Kidd Parent Advocate and United Supporter of ALL Children ACROSS Disabilities SAMPLE LETTER TO GOVERNOR: (This exact letter was also sent to the State Senator and Representative by just changing the address and greeting to each official! Only " cc Mr. Bittenbander " on your letter to the Governor.) Sherry Kidd and Lyons Address Phone March 14, 2002 The Honorable Mark Schweiker 225 Main Capitol burg, PA 17120 Dear Governor Schweiker, The state provides support to our son, Will, through the Medical Assistance Program for Disabled Children. We are extremely concerned about the proposal to tie eligibility of benefits for children with disabilities to household income. I attended the Appropriations Committee hearings on the DPW budget and am more alarmed now than I was before. Will is eight years old. He has physical, medical, behavioral and mental disabilities. He was born with achondroplasia, a form of dwarfism. He has central and obstructive apnea, restrictive lung disease and asthma. He is ventilator dependent when asleep. He has hydrocephalus and slit ventricles which have required over 40 neuro-surgeries to date. The longest he has gone without surgery is 11 months. He has a seizure disorder and many other medical complications. Will also has developmental delays. He communicates through sign language and pictures. Due to Will's extensive medical needs, he requires skilled care 24 hours per day. He receives 16 hours of homecare nursing 7 days a week and we provide the remaining 8 hours of care per day. Our private insurance allows 240 hours of homecare annually. The remaining yearly homecare cost is approximately $200,000. Our entire household income does not equal that amount. We cannot afford the homecare expense alone much less the additional costs of medical equipment, medications and therapies. Although private insurance covers many expenses, without medical assistance for Will, we would be unable economically and physically to provide the care he requires to stay healthy and alive. Setting an arbitrary income limit without considering the medical and additional expenses related to the disability is ludicrous. The associated costs of caring for children with disabilities are more than families can bear regardless of their income. Feather Houstoun testified that there were children in this program without severe medical needs however this program already requires that children meet very strict SSI disability standards. She also testified that children who meet an institutional level of care would be " taken care of by the state. " Pennsylvania currently has no programs or waivers which would cover Will's needs and as you know, waivers have a limited number of slots and most have waiting lists. We are asking you to put programs in place to provide for Will and children like him BEFORE their benefits are terminated by this proposal. Currently, state support allows Will to live with our family at home in an extremely loving, supportive and nurturing environment. The progress he has made in our home setting is amazing. Will attends our local school in an inclusive first grade program and participates in community activities. He thrives with this support. Will is a very happy boy who is loved dearly by family, classmates and community. We have been told that if Will were not eligible for MA he would first be hospitalized and then institutionalized due to our inability to provide for his medical care. This would devastate our family. This would also devastate Will. After one month, federal law would require the state to pay for Will's institutional care after all which would be two to three times greater than the costs of caring for him at home. We would go to any extreme to keep him at home, but we would not place his life in danger due to our exhaustion or inability to pay for his care. We are totally committed to our son. We would sell our house and deplete all of our resources including retirement funds to keep Will at home but that would only prolong the inevitable outcome of institutionalization tearing apart our family and negatively impacting Will's quality of life. Another alternative would be for my husband to take a position with a lower salary that would allow Will to qualify for benefits - but who would be served by that? We urge you to keep the Medical Assistance Program intact and continue providing for children with disabilities without tying eligibility to family income. The added financial, emotional and physical stress this proposal would place on families is more than any family could survive. Please continue helping families support their children with disabilities rather than punishing families for trying to care for their children at home. The proposal to tie eligibility to family income is short sighted and will cost significantly more than the costs of maintaining the program as it stands. It will also destroy families. Sincerely, Sherry Kidd and Lyons CC: Mr. A. Bittenbander Secretary of the Budget SAMPLE LETTER TO SENATOR: (This exact letter was also sent to the Governor and State Representative by just changing the address and greeting to each official! Only " cc Mr. Bittenbander " on your letter to the governor.) Maureen Reilly and Doug Fischer Address*Phone March 15, 2002 The Honorable Clarence D. Bell 280 North Providence Road Media, PA 19063-3525 Dear Senator Bell: We are writing to urge you to reject the Department of Public Welfare's ( " DPW " ) proposal in the budget to eliminate access to Medical Assistance ( " MA " ) for children with profound disabilities whose family's income exceeds $100,000. The arbitrary $100,000 cut-off does not take into account cost or availability of services, uncovered expenses relating to care of the child, number of disabled children in the family, or other critical cost of living issues, such as vast regional differences in cost of living and day care expenses (for dual income families). On March 6, 2002, I attended the House Appropriations Committee hearings with Secretary of DPW, Feather Houstoun, and was shocked at many of her insensitive and unsupported comments. The DPW apparently has failed to recognize that the termination of access to MA will devastate many families who are already suffering traumas relating to raising a profoundly disabled child. Last May, our two year-old son Ben, was diagnosed with autism. If your life has been touched by autism, you know the frightening behaviors that characterize this disorder. Ben did not speak at all, violently banged his head, screamed uncontrollably in a high-pitched tone, and flapped his hands. He did not respond to his name and rarely made eye contact with anyone, even us. Despite our efforts to engage Ben, he would sit alone for hours, spinning Tupperware lids. At the time of Ben's diagnosis, we were expecting our second child, and could not imagine how our growing family was going to survive. Every day we watch our precious daughter with the fear that she too may be inflicted with this horrible disorder (that is much more likely with siblings). Thanks to Medical Assistance, Ben receives one-on-one therapy for 34 hours per week and is making great progress. Ben's therapists have spent countless hours nurturing a critical bond with him, and his life is beginning to blossom as a result of their intensive efforts. Ben is learning to communicate verbally and with pictures, he bangs his head much less, and is beginning to show an interest in socializing with other people. Friends who had never seen Ben meet their eyes are now greeted with a smile and " hi, " and we have at last heard the words that every parent waits to hear: " mommy " and " daddy. " If we had to pay for Ben's current level of services, it would cost over $40,000 ($80,000 if our daughter is autistic, as well). We are a two-income family living in the Philadelphia suburbs. In addition to a mortgage, day care, and student loans, we have substantial annual out-of-pocket expenses relating to Ben's disability of at least $10,000. The math isn't hard to do. The services essential for Ben would cost almost every penny we have, leaving us in poverty. Additionally, there is no mechanism to allow for private payment of MA therapists, so even if we could afford services, we could not retain Ben's therapists. To make matters worse, there is NO agency in our area providing these services outside of MA, so we would be forced to take on the impossible task of training and recruiting therapists on our own, all while working full-time and caring for our children. Even if we could afford it, the process of setting up a program privately takes months. Meanwhile, our son's fragile connection with the world would be shattered, all for a marginal budget savings in DPW's bottom line. Ms. Houstoun acknowledged this dilemma, but did not believe it was DPW's problem. Instead, she claimed the decision to provide services (which DPW already acknowledges are medically necessary) is akin to a parents' decision to send a child to private rather than public schools. This glib analogy is outrageous and horribly disrespectful to families who are enduring tremendous hardship to sustain a decent and humane quality of life for profoundly disabled children. In the hearings, Ms. Houston claimed the underlying goal of DPW is to allow people to live their lives as independently and self-sufficiently as possible. If this is true, then the future of my son's critical services should not be in jeopardy. Although autism is a profound and life-long disability, early intervention with behavioral therapies provided through MA will eventually transform many people with autism into independent, self sufficient and tax-paying adults. As time goes on, Ben will require less therapy and eventually may be mainstreamed in public school. The long run savings to the taxpayer, who would otherwise be paying for private schools and eventual institutionalization, will be enormous. As a family with a disabled child, we face many hurdles every day. The loss of MA is one that we simply could not clear. Please do not allow the Commonwealth to turn its back on disabled children and the families who support and love them. Sincerely, Maureen E. Reilly & S. Fischer PA HEALTHLAW BULLETIN: Governor's Budget proposes to eliminate Medical Assistance for some children with disabilities! The Governor's Budget proposes to eliminate Medical Assistance (Access) for several thousand Pennsylvanians including some children with disabilities. The Governor's Budget proposes to start counting parents' income in determining eligibility for Medical Assistance for children with disabilities. Currently, parental income is not counted for Medical Assistance if the child is determined to have a severe disability. Under the Governor's proposal, children whose parents had total annual incomes of $100,000 or more for a family of 4 would be INELIGIBLE for Medical Assistance! Presumably, the income limit would be lower for families of 3 or less and perhaps higher for larger families. The State would NOT consider the child's medical expenses or other expenses related to the child's disability. The Governor is proposing this cut to start sometime after July of this year. If this proposal takes effect, children whose parents' income exceed the cap would have to find other funding sources for or lose services currently funded under Medical Assistance or HealthChoices such as: * in-home nursing, * prescriptions, * nutritional supplements, * medical equipment (wheelchairs, hearing aids, lifts, etc.) * supplies (diapers, underpads, etc) * reimbursement for transportation to medical appointments * wraparound (TSS) * residential treatment facilities. Since some providers don't offer some of these services, like wraparound, for private pay or any other payment source, it could mean that the family would have to use some different service, even if they could afford to pay for the TSS. Furthermore, a family with income at the limit would be entitled to free services while a family with income just $1 above the limit would not get any Medical Assistance funding, regardless of the amount of their expenses. Although this proposal was announced in the Governor's Budget, it does not need to be adopted as part of the State Budget. In fact, legislative action is not required for DPW to cap this category of Medical Assistance. Nonetheless, because the Governor included it in his proposed Budget, it is expected to be part of the general budget debate in the State Legislature. State Representatives and Senators who are Members of the House and Senate Appropriations Committees will have the opportunity to question the Department of Public Welfare on this and other cuts during hearings on March 5th (Senate) and March 6th (House). This cut has been proposed as a cost savings measure. The Governor's Budget estimates this cut will save $1.2 million in the first year. However, the Governor's Budget does not appear to take into consideration additional costs that may be incurred if this cut goes into effect. For example, if a family loses community supports as the result of the loss of Medical Assistance, and this results in the institutionalization of a child, Medical Assistance will HAVE TO pick up the cost of that child's institutional care once the child has been out of the parents' home for 1 month! This is required by current federal law which the State cannot change. The cost of that institutional care is most likely to be much more expensive than the community based supports the child could have received had Medical Assistance not been cut. In addition, this proposed cut is likely to reduce the amount of federal funds currently available to many school districts for special education. Currently, school districts and IUs in Pennsylvania are eligible to participate in a special funding program run by the PA Department of Education called " Access " . Under this program, school districts can bill the State for certain special education costs incurred for students on Medical Assistance. These costs are then billed by the Department of Education to Medical Assistance which in turn draws down federal matching money. That federal matching money is then returned to the school districts. Since the federal government only provides matching funds for those students who are on Medical Assistance, the fewer students on Medical Assistance, the less federal money school districts will get. Because the school districts would still have a legal obligation to provide special education services, the reduction in federal funds will force school districts to make up the revenue shortfall from other sources, including possibly tax increases. For further information and updates, please contact the PA Health Law Project at 1-800-274-3258 or visit our website at www.phlp.org. You may also contact the Disabilities Law Project for more information at 1-215-238-8070. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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