January 2004
New York State Executive Budget for 2004-05
On a Collision Course with Community Needs and State Policy Agenda,
Threatens to Create Setbacks for People with Disabilities
In 2003, New Yorkers with disabilities made strides. Albany’s policies encouraged work and independence—supporting people with disabilities entering the work force and leaving institutions; enhanced access to health care for adults with disabilities; sustained services that help children with disabilities succeed. As in years past, the FY ’05 Executive Budget offers a degree of hope for people with disabilities. At the same time, it seriously threatens them with several short-sighted initiatives that may reverse progress made towards economic independence and full social integration.
Work and Financial Security: In 2003, the Medicaid Buy-in program began removing barriers to work for people with disabilities by enabling them to keep their health benefits as they work.
• The FY ’05 Executive Budget would offer SSI beneficiaries a cost-of-living increase to help stabilize those on the bottom rung of the economic ladder.
• However, it threatens family integrity and stability by reducing aid to families with children or adults with disabilities in the household who must contend with the additional costs of living with a disability.
• Elimination of dental, vision, podiatry, psychology and nursing services for people in the health care safety-net will remove services essential to achieving and maintaining the stable health status that is a pre-condition to work.
New Vision for Long-term Care: The Most-Integrated-Setting legislation created a foundation for implementing of the Supreme Court’s Olmstead decision which enables people with disabilities to transition from nursing homes to their own homes with appropriate long-term care supports.
• The Governor’s Working Group on Health Care has articulated a sweeping vision of long-term care that emphasizes care at home and in the community—the preferred solution for people with disabilities.
• Yet, the proposed Budget would change eligibility for home attendant and personal care and cut home care to the extent that it puts people at risk for institutionalization.
Quality Health Services and Education: New York State Department of Health’s “Disability and Health” program brings information and resources regarding health and wellness to people with disabilities.
• Unfortunately, the Budget imposes new restrictions and cost barriers to healthcare and prescription drugs for people with disabilities who are at risk of worse medical outcomes. It moves the disabled into managed care plans that are not prepared to serve them.
• Academic success for children with disabilities will be undermined by shifting children to a health benefit package that will not meet their needs and the imposition of cost sharing for families and new administrative barriers to services.
We know that New York must make difficult decisions. Still, policy makers must remain committed to improving the lives of people with disabilities, even in difficult times. New York needs a budget where everyone pays their fair share, a budget that preserves progress made for people with disabilities and avoids cuts that will devastate their lives.
February 2003
High Risk Cuts in Health Coverage Threaten People with Disabilities
Medicaid Buy-in Implementation Delay Keeps Lives on Hold
Joe, a freelance photographer, put his life on hold. He would like to work full-time, but can’t afford to lose his Medicaid. He needs psychotherapy and medication to, as he puts it, “stay in the normal zone.”
Despite the enactment of the Americans with Disabilities Act, individuals with disabilities face enormous barriers to employment. In New York, the unemployment rate for people with disabilities is about 70 percent.
The Medicaid buy-in program would help. When it passed leaders in the disability community thought that finally people would be able to move “from the margins to the mainstream.” Since passage, the community has worked hard on implementation planning.
Now implementation is stalled, indefinitely.
Recommendation: Put implementation of the Medicaid Buy-in back on track. Seek community input on implementation issues and rollout the program on time.
Reducing Family Health Plus Eligibility for Parents from 150% FPL to 133% FPL
I’m a 54-year-old journalist. I was diagnosed with epilepsy last June and have been on life support twice since my diagnosis. My employer said that I am too sick and fired me. I have COBRA and can’t afford to miss my pills—without them I’d be on a ventilator. My COBRA will run out soon and I have too much income to qualify for Family Health Plus. But, I can’t afford insurance either.
Already, one in four New Yorkers lack health insurance. People with disabilities are as likely to be uninsured as the general population. Studies have shown that:
• Lack of health insurance delays diagnosis and treatment of disabling conditions.
• It impedes screenings for cancer and cardiovascular disease.
• Uninsured women are more likely to be diagnosed with late stage breast cancer.
• The uninsured delay treatment, even for “serious” or “morbid” conditions.
To address this problem, New York State began implementation of an expansion of the Medicaid program for adults, Family Health Plus, in 2001. Individuals whose disabilities are significant but not severe enough to qualify for Medicaid Spend-down and have incomes above Medicaid eligibility levels benefited from the expansion. In addition, for some people with disabilities, Family Health Plus offers an alternative to the more administratively burdensome Medicaid Spend-down program.
Still, many of the uninsured don’t qualify—coverage is just out of their reach. Instead of cutting back on coverage, the State needs to expand insurance coverage for people with disabilities.
Reduction of Child Health Plus A eligibility for children ages 6-18 from 133% FPL to 100% FPL
In 2000, New York expanded Medicaid by creating the Child Health Plus program, offering coverage to children who would otherwise remain uninsured. The program is really two programs—Child Health Plus A and Child Health Plus B--with differing eligibility and benefits levels. The Child Health Plus A program includes important services for children with disabilities including: case management, skilled nursing, home health care, durable medical equipment, extensive mental health services, transportation to access care, medical supplies and special nutritional formulas that are not available to children in Child Health Plus B.
As a result of the reduction in eligibility, children with disabilities will be forced to switch from the Child Health Plus A program to the Child Health Plus B program and will lose vital services.
Recommendation: Maintain Family Health Plus eligibility at 150% FPL. Permit people with disabilities to buy into Family Health Plus coverage. Preserve existing eligibility levels for Child Health Plus.
February 2003
Medicaid Red Tape Keeps People with Disabilities from Care
Roll Back of 2002 Measures to Simplify Eligibility and Enrollment
Getting on Medicaid took a tremendous amount of work over several months. All the while, I was sick and not getting the care I needed. Though I don’t have money in the bank, I was told that I needed 12 months of bank statements. I don’t have the statements and copies from my bank cost $10 a page. I couldn’t afford that. So I got a letter from my bank. But that wasn’t good enough for Medicaid because it only said that my balance was $0. Then I got another letter from the bank. This one gave the date my account was closed. Again, this letter was not good enough for Medicaid because it did not show a year’s worth of transactions. Finally, after more phone calls and a third trip to the bank, I waited three weeks for the bank to mail me a list of my transactions written by hand. I have Medicaid now, but I’m upset that it took me so long to get covered for reasons I don’t understand.
In 2002, the State agreed to take important steps to streamline the Medicaid application process, eliminating requirements that are a stumbling block to coverage. Now, the Executive Budget proposes to delay implementation of self-attestation regarding assets for adult Medicaid applicants.
Complexity in the eligibility and enrollment process will severely affect people with disabilities. Many people with disabilities are eligible for public health insurance programs, but are not enrolled because the enrollment process is too difficult to navigate despite their immediate treatment needs.
Delay of administrative simplification measures will mean that thousands people with disabilities, who would have qualified for health coverage, will now remain uninsured.
Recommendation: Proceed with the process of removing barriers to enrollment in public insurance.
February 2003
High Cost and High Risk Prescription Drug Barriers
for People with Disabilities
Decreased Access to Prescription Drugs for Medicaid Beneficiaries
Jorge is 72 years old. He has serious heart problems and his blood pressure is dangerously high. Recently, he got a prescription for his blood pressure medicine and took it to the drug store. Unfortunately, the doctor did not write the prior authorization code on the prescription. The drug store sent Jorge away without explanation and without medicine. Jorge went back to his doctor. The doctor scribbled some numbers on the prescription and Jorge went back to the drug store. Again, he was turned away—the doctor had not written down the correct code. Jorge couldn’t wait any more and spent his food money for his medicine.
The Executive Budget proposes to raise co-payments to $1 for generic drugs and $3 for name brand drugs for Medicaid fee-for-service beneficiaries and add co-payments for Medicaid managed care enrollees. In addition, Medicaid beneficiaries will face daunting barriers to prescription drugs in the form of a preferred drug list and prior authorization. Studies show that:
• Out-of-pocket cost barriers to medically necessary drugs can also make costs associated with medical visits, emergency hospitalization and adverse events spiral upward.
• Prior authorization barriers most adversely affect people with disabilities who have multiple conditions requiring treatment and who take numerous medications, have frequent dosage changes and who are medically fragile.
• Cost-sharing requirements mean that individuals have serious preventable symptoms like chest pain or shortness of breath. They are less likely to receive effective care for acute symptoms. Patients are less likely to get their medicines and show more risk factors for death.
Increased co-payments and prior authorization are high risk strategies that will have deadly consequences.
Recommendation: Do not increase cost-sharing. Legislatively create consumer safeguards for Medicaid beneficiaries who must seek pre-approval for prescription drugs.
Failure to Fill Critical Gap in Prescription Drug Coverage for People with Disabilities on Medicare
Jane worked as a journalist for 16 years. In 1995, she was diagnosed with Multiple Sclerosis (MS). When she had to leave her job due to the effects of her MS, she was able to continue her health coverage through COBRA. When COBRA ran out, she became eligible for Medicare, which does not cover prescription drugs. Just one of her prescriptions costs $200 a month. Jane chooses what medications to take based on money. She is now losing her eyesight; there are treatment options that would slow or prevent her vision loss, but she can’t afford them.
The EPIC program provides prescription drug coverage to elderly Medicare beneficiaries. However, it leaves similarly situated people with disabilities without coverage. EPIC is a program that New York State can be proud of. However, significant prescription drug coverage gaps continue to exist for people with disabilities who are under 65.
An expansion of EPIC coverage to under 65 disabled Medicare eligibles would relieve pressure on the Medicaid program.
Recommendation: Expand EPIC to people under 65 with SSDI at current EPIC income eligibility levels. Reduce cost-sharing for all EPIC enrollees.
February 2003
Choking off Care for New York’s Vulnerable Elderly and Disabled
High Costs Transferred from the State to Disabled and Elderly
John’s mental illness is controlled by medication and mental health counseling. As a result, he finds it possible to travel outside his neighborhood, and interact with strangers. The choice between paying for housing and counseling would shake his hold on stability.
The Executive Budget proposes to eliminate payment of cost-sharing for people with disabilities and the elderly who are eligible for Medicare and Medicaid--dual eligibles. New York State Medicaid currently pays their deductibles and co-insurance for covered services.
When these costs are charged to beneficiaries, they will be at risk of losing access to community-based services. Most at risk of losing services are those relying on Medicaid to pay the 50 percent co-insurance for the Medicare approved amount for psychiatric services.
The sickest and frailest people with disabilities cannot afford to seek services if they face these cost barriers.
Recommendation: Continue payment of cost-sharing for dual eligibles.
February 2003
Turning Back the Clock on Deinstitutionalization.
Lisa is 37 and has a spinal cord injury. When her relationship ended and her boyfriend left town, Laura lost her caregiver. She needed 24 hour home care to avoid landing in a nursing home.
Cuts to Home Care Threaten Implementation of Most Integrated Setting Legislation
The Executive Budget imposes a provider tax of .6 percent. It establishes new utilization review measures (without specifying these). It reduces reimbursement through elimination of the trend factor. These cuts appear to be at odds with the Governor’s Most-Integrated Setting legislation which would encourage reliance on home and community-based care as the preferred alternative to institutionalization for people with disabilities.
Home care is essential for people with disabilities, many of whom live alone with no family member or close friend to assist them. Because home care reduces the need for hospitalization, shortens hospital stays, and decreases the need for institutionalization, coverage for home care services reduces overall health costs.
Cuts will threaten the supply of home care. Home care agencies lost more than $172 million in Medicare reimbursement since 1997. As a result of cuts in the trend factor, agencies are unable to keep pace with increasing costs. Now, home care agencies face staffing shortages that cause delays in providing services. Introduction of new utilization controls will require an investment of resources in administration and will take time and resources away from care for consumers.
Many counties have a county-run home health care agency as the sole provider of home care services in the community—these counties could face new pressure to close these agencies due to the increased financial burden that they will bear.
Cuts of this magnitude may impede progress of deinstitutionalization by reducing the supply of community-based care.
Recommendation: Maintain reimbursement for Home Care and do not impose additional utilization review.
February 2003
Co-pays Threaten Access to Crucial Services
for Children with Disabilities
Lilly is two. She has several disabilities. She needs physical therapy eight times a month. She has speech therapy twelve times a month. She has occupational therapy eight times a month. Lilly’s parents make $25,000 per year.
Early Intervention Cuts Cost-shift to Parents
The Early Intervention program is a federal entitlement program that ensures services to infants and toddlers who have developmental disabilities and delays from birth to three years of age. The Executive Budget imposes fees on parents who already experience the high out of pocket costs associated with having a child with a disability. This cost-shifting will ensure that children with disabilities continue to be left behind.
Studies show that:
• The earlier a child with a disability receives services, the better the outcome;
• Unimpeded access to early intervention can decrease the need for services in the future;
• Cuts will fall most severely on families of children with multiple disabilities.
Making parents responsible for 20 percent of their child’s service costs imposes a significant burden on families already struggling with the additional financial impact of caring for a child with a disability.
Recommendation: Maintain the State’s commitment to children with disabilities, do not impose parent fees for Early Intervention Services.
February 2003
Public Watchdog Eliminated
Elimination of the Medicaid Managed Care Advisory Review Panel Reduces Accountability in Medicaid Managed Care
The Medicaid Managed Care Advisory Review Panel (MCCARP) is a watchdog group established in the 1996 Medicaid Managed Care law. It has been responsible for pressing for greater accountability in the program and quality assurance efforts aimed at protecting people with disabilities. For example, the MCCARP focused attention on the availability of specialty care and on health outcomes for people with disabilities as well as satisfaction with health care for people who are high health care users. It has provided the only forum for public comment on the Medicaid managed care program.
It is a forum where the most difficult Medicaid managed cafe issues have been able to be discussed by all the stakeholders. As reimbursement is cut and practitioner capacity shrinks, there will be no formal ongoing mechanism to ensure communication and constructive discussion of the details of the program.
Elimination of oversight will halt progress towards creation of a Medicaid managed care program that is capable of meeting the needs of people with disabilities at a time when budget cuts create danger.
Recommendation: Preserve and strengthen the Medicaid Managed Care Advisory Review Panel.
February 2003
Education Budget Shortchanges People with Disabilities
Reduced School Aid
Investment in today’s youth who are tomorrow’s leaders is the key to ensuring the welfare of New York State. Yet, education took one of the largest overall cuts in the Governor’s proposed budget. State school aid will be reduced by 8.5% or $1.24 billion. Included in this cut is a $407 million reduction in general operating aid, discretionary and expense-based programs including health, mental health, academic and supportive services. Funding was eliminated for the Class Size Reduction and Universal Pre-K programs. The elimination of funding for programs such as Universal Pre-K and Class Size Reduction places the full weight of funding existing programs on local school districts.
The universal pre-K program provides an integrated setting for children with disabilities to receive services alongside their non-disabled peers. A loss of this opportunity would result in placement of children in segregated settings, eroding gains New York State has made in integrating preschoolers with disabilities.
Recommendation: Retain funding of universal pre-K.
Reduced Aid to Special Education
Under IDEA, schools have a legal responsibility to provide a program that is determined to be the most appropriate for the child. This cut represents a significant reduction in the reimbursement levels to local school districts for the provision of special education services to the State’s most severely disabled students. Local districts would only be reimbursed for 49% - as compared to the current rate of 85% - of the cost of providing these programs and services. They will be forced to place fewer students privately with the result that students with severe disabilities will no longer receive an education that truly meets their needs. Approved private schools that can offer these students the best chance for success will lose students, consolidate programs and ultimately close.
In addition to reducing State aid for special education services and supports, the Governor also proposes the use of $6 million in IDEA funds to offset certain administrative costs related to preschool programs that serve students with disabilities and fair hearings for preschool students with disabilities. These funds could be better used to continue funding Special Education Training and Resource Centers, Early Childhood Direction Centers, mental health services for students with disabilities, support services for students with disabilities in low performing schools and other projects to improve performance and classroom support.
These proposals would undermine education for children with severe disabilities and divert resources that could be used to aid children by improving classroom supports.
Recommendation: Uphold and do not undermine the objectives of IDEA. Ensure that New York Sate allocates the proper funding toward the proper implementation of IDEA, including the New Continuum of Services in New York City.
Reductions in Support to SUNY and CUNY
As stated above, approximately one half of CIDNY’s consumers who receive services from VESID attend college. VESID provided tuition support for 6,094 people last year. This proposed increase would impel state and city colleges to raise tuition by as much as $1200 per year and would place more pressure on VESID to cover higher tuition costs. As a result, college candidates with disabilities are in danger of not receiving the tuition assistance they need from VESID to cover tuition costs. It is not in the State’s interest to limit access to higher education for people with disabilities.
The economy depends highly on the work and qualifications of persons with college degrees. Do not short change the next generation of leaders which includes persons with disabilities.
Recommendation: Do not raise tuition for SUNY and CUNY.
Loss of Dedicated Funding Streams
“Flex Aid” would consolidate nine existing funding streams, including funds earmarked for special education services and educationally related support services provided to students not enrolled in the special education program, into one general operating fund and would allow individual school districts to target funds to locally defined needs. This is intended to allow local districts to spend their aid in a way that boards of education deem most beneficial for their local programs.
Flex Aid inadequately addresses the needs of students with disabilities. It fails to ensure that funding is adequate to provide them with targeted services and accommodations. It would force them to compete for funding with general school operational needs.
Recommendation: Special education funding should be carved out of the Flex Aid system and remain unique funding streams to ensure delivery of services to students with disabilities and accountability.
February 2003
DOL Not Accessible Home for People with Disabilities
Transfer of VESID and CBVH to the Department of Labor Undermines System of Supports Needed for People with Disabilities to Transition to Employment
Successful employment outcomes and the quality of the educational and training background go hand in hand. The office of Vocational and Educational Services for Individuals with Disabilities (VESID), under the New York State Department of Education, and the Commission for the Blind and Visually Handicapped, under the New York State Department of Family and Children’s Services, have the organizational capacities to support the occupational development of individuals with disabilities from preschool through post-school job acquisition.
The Department of Labor is mandated to serve people with disabilities. However, they have not developed a track record of success over their many years of operation.
Their implementation of the Workforce Investment Act provides a recent example of their lack of commitment to enabling people with disabilities to enter the workforce. This program relies on local One-Stop Centers which offer those searching for employment referrals, placement opportunities, education and training and support services such as child care and transportation. Advocacy aimed at getting the One-Stops to serve people with disabilities have proven to be fruitless. One-Stop Centers are often not even physically accessible.
The Department of Labor is in no way prepared to accommodate people with disabilities.
Recommendation: Maintain VESID within the State Education Department.
February 2003
Drastic Cuts to Disability Safety-Net Dash Hope:
Disparities between People with Disabilities and those Without Widen
Cut to Essential Services provided by Independent Living Centers
Maria, a woman with a disability in her late 20s came to CIDNY to get disability-related income assistance. With CIDNY’s help, she landed in the safety-net. When she was ready to transition to work, CIDNY helped her complete computer training. We worked with her to find employment that met her physical and financial needs and helped her navigate the work incentives program that led her to economic self-sufficiency.
In 2002, the Center for Independence of the Disabled in New York, served nearly 10,000 consumers who needed:
• Peer counseling to cope with a new disability, life with traumatic brain injury, the challenges of the workplace for women with disabilities, parenting a child with a disability;
• Assistance navigating the increasingly complex and gap-ridden health care system;
• Tips on finding housing that is accessible and affordable on a limited and fixed income;
• Finding a way through the education maze and identifying employment opportunities;
• Help with sorting out transportation problems;
• Disaster relief.
The Executive Budget proposes to cut $1.2 million from the appropriation to Independent Living Centers. These cuts are proposed at a time when the deepening recession is squeezing people out of the job market; when deep cuts in the health care infrastructure threaten access to basic services; when educational opportunity is being priced out of reach.
The Center for the Independence of the Disabled in New York will have to respond to cuts as a a crisis. We will be forced to:
• Make piecemeal cuts across the board, weakening our effectiveness in all areas of operation;
• Cut deeply in specific areas, such as employment or housing-related services, endangering our consumers’ ability to achieve economic self-sufficiency and independence;
In either event, cuts will lead to rationing services. We will be forced to establish new criteria to use to deny access to eligible clients or put them on waiting lists for basic services.
At the moment that the State faces profound economic pressures, cutting Independent Living Centers is a questionable strategy. Independent Living Center services save money by enabling people with disabilities to avoid placement in nursing homes and to transition to the community from nursing homes. According to a 1999 report from the National Conference of State Legislatures, taxpayers saved over $410 million in one year as a result of ILCs’ activities helping people with disabilities leave nursing homes and/or remain in their communities.
A common-sense budget would include investment in independent living centers as part of its strategic approach to overcoming State budget woes, growing the economy and investing in New York’s families.
Recommendation: Preserve funding for Independent Living Centers.
February 2003
Public Assistance: Slashing the Safety-net
No Cost of Living Increase for SSI Beneficiaries
More than 600,000 New Yorkers rely on Supplemental Security Income as their sole source of income. Individual SSI benefits for New York State residents are currently $639 per month. Most beneficiaries are forced to direct the bulk of their benefits to housing and health-related costs, leaving them little or nothing for personal needs.
Each year the Federal government increases its funding for SSI to reflect inflation. This year, the Governor has proposed diverting the $25.7 million cost of living increase to offset the administrative costs of the SSI program.
A federal cost-of-living increase would provide about $13 a month in additional aid to SSI recipients, a significant amount when you’re budgeting down to the last dime.
The elimination of the cost of living increase for SSI beneficiaries in New York City combined with anticipated increases in expenses such as public transportation will further increase the economic crisis many people with disabilities face on a regular basis.
Failure to Use TANF Surplus for Employment Preparation Places Employment Out of Reach for People with Disabilities
One-third of adults with disabilities live in a household that has an annual income of less than $15,000. While it is widely assumed that people with disabilities are concentrated in the SSI program, studies demonstrate that many parents who are Temporary Assistance for Needy Families (TANF, formerly known as Aid to Families with Dependent Children) have disabilities. It is critically important that parents with disabilities who rely on TANF receive supports and services that they require to help them succeed in the work place. If they are unable to work, help must be available to ensure that they successfully transition to SSI.
The Governor is proposing to use less than 10% of the proposed TANF surplus on employment and transitional service initiatives specifically designed to help move people from welfare to work. The Governor's proposal for using New York State’s TANF surplus does not include funding for programs that support this goal, including funding for vocational education, literacy programs, transportation assistance, counseling and supportive services and youth employment programs. A significant portion of the more than $2 billion surplus is being used to finance programs and services historically paid for out of the State’s general revenue funds, including $225 million for New York State’s Tuition Assistance Program (TAP).
If TANF surplus funds are not sufficient devoted to vocational education, literacy, transportation assistance, counseling, supportive services and youth programs, the goal of economic self sufficiency will be out of reach for thousands of individuals with disabilities.
Recommendation: Commit TANF surplus funds to training and supports geared to prepare people for employment.