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This publication was funded in part through a grant from the Ohio Developmental Disabilities Council.
The Ohio Family Support CouncilThe Ohio Family Support Council (FSCouncil) is a statewide group of family advocates and state agency representatives. The FSCouncil represents families with children of all ages who have various types of disabilities. The FSCouncil believes that all children can and will live in a family that is safe, nurturing, and permanent, if that family is adequately supported. The FSCouncil advocates for a system of supports and services that is designed to meet the needs of families and is family-directed and family-driven. The families of the FSCouncil identified six critical issues for families with children who have disabilities. The families wanted to develop an informational booklet as an avenue to share their concerns and promote their recommendations in an effort to improve family support in Ohio. The FSCouncil is partially funded through a grant from the Ohio Developmental Disabilities Council and administered by the Ohio Legal Rights Service. To contact the FSCouncil: c/o Ohio Legal Rights Service These individuals, representing all regions of Ohio, comprise the families of the FSCouncil.
IntroductionAll families need information and support to raise healthy children. When a family has a child with a disability, that family has additional needs - beyond a typical family's needs - for supports and services that address their child's disability and the family's stability. This booklet was developed for policymakers to learn about issues that are important to families with children who have disabilities. Throughout this booklet, journals, other published materials, and the voices of families who have children with disabilities are highlighted to support specific issues. The family voices are heard through selected quotes from some of the more than 2,200 Ohio families who completed the Family Support Survey, a satisfaction and needs survey conducted by the Family Support Collaborative. This booklet lists recommendations for policymakers to address six critical issues affecting families with children who have disabilities. These issues represent some of the major barriers these families have encountered over the years as they raised their children and tried to maintain the stability of their families. The families of the FSCouncil developed these recommendations. If you need more information about these issues, your best resource is families — talk with them. Recommendations for PolicymakersRecommendation 1: Develop a comprehensive, affordable, accessible, effective and flexible, family driven, family controlled respite care system that will meet the diverse needs of families.The FSCouncil recommends that Ohio apply for a competitive grant from the national Lifespan Respite Care Act to increase the availability of respite care services for family caregivers of individuals with special needs. Ohio families have documented a need for respite, including emergency respite, and more trained respite care providers. Funds from the Lifespan Respite Care Act are available for the development of respite care services and to train and recruit respite care workers and volunteers. Also, policymakers are encouraged to increase funding for the current Ohio Department of MRDD Family Support Services program and to modify Ohio's Medicaid State Plan and Home and Community Based Waiver to include respite care as a service option. Recommendation 2: Improve Ohio's Medicaid Program and adopt a "Money Follows the Person" policy.Policymakers are encouraged to revise the Medicaid State Plan so that dollars that are spent on services for a child go where the child goes — a Money Follows the Person policy. For example, if a family provides a child with informal caregiving at home, the money can be used to pay the informal caregiver. Also, make Money Follows the Person the controlling objective in Ohio's method of funding services. FSCouncil supports Ohio's application for the Money Follows the Person Rebalancing Demonstration Grant, and looks forward to working with ODJFS and other advocacy organizations on addressing issues affecting children with disabilities. Recommendation 3: Implement the mandate of the U.S. Supreme Court case Olmstead v. L.C.Ohio should amend all its current and prospective statutes, regulations, policies (including, but not limited to fiscal policies) and practices which conflict with the Olmstead v. L.C mandate to ensure and protect a family's right to self-determination, and access to needed supports and services to enable a child to continue to live at home with family and still get services or treatment he or she needs. Recommendation 4: Extend behavioral health and health care coverage to all children with disabilities and special health needs. Provide a full range of health care benefits so all needs are covered.All programs that affect children's health should be coordinated and seamlessly connected. This includes Medicaid, SCHIP, EPSDT, all Medicaid Waiver programs, BCMH, and managed care expansion. Ohio should also conduct outreach and modify enrollment policies to assure that those children who are eligible for publicly financed health coverage are getting it. Recommendation 5: Pass legislation to implement the Family Opportunity Act (FOA).The FOA would allow families to "buy-in" to Medicaid with a sliding scale premium and thus increase the number of people who get Medicaid. FOA would also improve access to health care by making Medicaid more attractive as a payment option for medical professionals. FOA would increase demand for medical services by people on Medicaid, and if market forces work as expected, also increase the supply of professionals who provide services. Recommendation 6: Implement Family Support 360 - Create a single point of entry where families can find out about and apply for services; use a standardized, universal application; and support family to family communication.Through a federal grant, Ohio developed a plan for a single point of entry that would let families use a universal application to apply for services, help agencies provide services families want, and measure families' satisfaction with services and quality of life. This technology plan, Family Support 360, is ready to go when funded. Implementation would help families stay intact, promote family choice and family to family communication. Recommendation 7: Increase family involvement in state government.Families with children who have disabilities should have an active voice in policy decisions across the systems that serve them. Families should have input into the design, development, implementation, and evaluation of programs at the local and state levels. Recommendation 8: Require the Ohio Department of Job and Family Services, in collaboration with ODMH and any other agency, as appropriate, to monitor the number of Ohio families who relinquish custody of their child to access services.Ohio should track custody relinquishment data, on an annual basis, to assess the extent of this practice across the state. Issue 1: Keeping a Family TogetherFamilies with children who have disabilities need a system of services and supports that makes it possible for them to stay together, at home. Explanation of the issueFamilies with children who have disabilities face many challenges, all of which can make it difficult for the family to stay together. Many of the challenges are uniquely stressful, and only experienced by families who have a child with a disability. The Family Support Survey, completed by nearly 2,300 Ohio families who have children with disabilities, found that 1 in 5 families did not receive the supports they need for their children to live at home. One of the biggest challenges for families is being able to give a child the care he or she needs. Because this care can be expensive or very specialized (for example, medical services, therapies, special equipment, special schooling), families often must make tough choices. Families sometimes must choose between paying for a child's care and paying for basic necessities for the family, like food or rent. If a family cannot pay for both, a child may go without needed care, or the family may not be able to pay their bills, buy food, or buy medicine for other family members. In the United States, there are nearly four million people of all ages who have a developmental disability and live at home with their family. Their family members become the primary caregivers. Family caregivers provide 80% of all long-term care in the US, a level of care valued at more than $300 billion a year. This unpaid family care represents more than what was spent on nursing home and paid home care combined. Even though most families take great joy in providing care to their loved ones so that they can remain at home, the stress of continuous care giving has physical, emotional and financial consequences which can lead to caregiver illness, marital discord, and costly out of home placements. These statistics and findings demonstrate that family members are the core long-term care providers in the health care system in America and that they need support. (Footnote: See the December 6, 2006 Congressional Record for the House of Representatives and the December 8, 2006 Congressional Record for the Senate.) Without support, these informal family caregivers may be unable to meet the needs of their child with a disability and the strength and structure of the family may be compromised. It is well documented in the literature that supporting family caregivers is a cost-effective way to prevent or delay more expensive out-of-home, or institutional, placements. A 1998 study found that if patients with Alzheimer's disease are delayed in entering an institution by one month, over one billion dollars is saved annually. (Footnote: J. Leon, C-K. Cheng, and P. Neumann, "Alzheimer's Disease Care: Costs and Potential Savings," Health Affairs 17.6 (1998): 213.) In a recent economic study of Long-Term Care Costs in Ohio, the authors indicated that Ohio ranks 49th in the nation in funding home care for the disabled and elderly. The state could save billions of dollars simply by increasing the use of home care and by avoiding the higher cost of future nursing home placements. (Footnote: Levin, Driscoll, and Fleeter, "Executive Summary: An Economic Study of Long-Term Care Costs in Ohio. Home Care and Medicaid Solutions for Ohio." The Ohio Council for Home Care (2007). Informal CaregivingRather than paying for others to provide specialized care, family members often provide unpaid care. This care can involve many unique responsibilities, including providing nursing care and daily living activities. This is called informal caregiving. It is informal because families are not paid to provide care (while other, non-family members, would be paid for providing the same services). While some families choose this, other families provide informal caregiving out of necessity, because it is impossible or cost-prohibitive to find a paid caregiver. While a family member can often best provide the specialized care a child needs, providing informal, unpaid caregiving sometimes means a family member must give up a job outside the home, a social life, or time with others in their family. Also, other family members must "fill in the gaps" that the caregiver can't because of caregiving responsibilities. A spouse may have to work two jobs, or a sibling must care for himself or herself and other children. Informal caregiving can create stresses that jeopardize family stability, and keep family members apart in daily life. Paying families to provide informal caregiving can lessen the impact, and benefit the child as well. Family quote:"I strongly feel that I am the best qualified person to provide home care services and some supplemental educational and therapy services. However, Medicaid pays a complete stranger with no understanding of my child to provide needed supports and services." "Choosing" out-of-home careOut-of-home care should never be a family's only option. In 1999, the U.S. Supreme Court ruled in Olmstead v. L.C. that states are required to provide community-based services for people with mental disabilities if the person or family wants, and treatment professionals decide that it is appropriate. This means that instead of having to go to a residential facility for services and treatment, a child should be able to continue to live at home with family and still get services or treatment he or she needs. Need for community-based servicesFamilies who have children with intense, complex needs are also challenged to make tough choices. These families may be forced to place their children out of the home in order to get appropriate services. These children and families may end up living miles apart, sometimes in different states. Custody for ServicesSome families are forced to give up custody of their child for services. Some families must give up custody of a child to the state, so the child can get care through a publicly-paid program (for example, a residential care facility). These families are split and de-stabilized - a child can't live with his or her family, and a family can't make decisions for their child. This is an extreme, yet too common occurrence in some areas of Ohio, especially for families of children who have mental health issues (mental health is also called "behavioral health"). Family quote:"We were promised testing if we gave Child Protective Services temporary custody over 1 [yr] ago and are still fighting for our girl to be returned home. She has been physically abused and has been in 5 foster homes and many respite homes in this time." Families need a system of supports (as defined by some of the issues outlined in this document) that makes it possible for them to stay intact, together, stable, and at home. Issue 2: Giving Families RespiteFamilies with children who have disabilities want and require a system of supports that includes respite care. Explanation of the issueWhile caring for children is a familial and cultural expectation, some families are required to provide much more care than is traditionally expected. Families with children who have disabilities confront a variety of day-to-day and life-long challenges that other families do not encounter. Families with children who have disabilities want to provide care for their children. Family members serve as primary caregivers for extended periods of time (24 hours per day / 7 days per week) and are sometimes required to provide care that would be provided by paid professionals like nurses, therapists, or aides. Raising a child with a disability can be fulfilling but providing continual care can be exhausting and stressful. Due to the increased demands on the caregiver's time, family caregivers are deprived of their sleep, give up time for themselves and have decreased opportunities to participate in activities with their spouse, their other children, and other friends and family. The stability of the individual family unit may be compromised and parents may be forced to consider out-of-home placement options for the child with a disability. Feelings of hopelessness, frustration, and anger may overwhelm the caregiver. Families need a respite from this daily, demanding life style. Respite CareThe FSCouncil defines respite care as a service that provides temporary or periodic relief for families from the day-to-day responsibilities and challenges of caring for their child with a disability. Respite care can be formal or informal depending on the family's choice and need. In formal cases, a trained and certified respite care staff member provides services (in or out of the family's home) to relieve the caregiver. In other cases, families may use informal, paid, community respite providers such as extended family members, friends, neighbors, or members from their place of worship. Both informal and formal respite provide the caregiver a break from their routine, and an opportunity to complete daily chores, participate in recreational activities, and emotionally "recharge" to become better prepared to address future caregiving challenges. Benefits of Respite CareRespite care is a service that is valued by Ohio families. The efficacy of respite care is well documented in the literature and anecdotally. Respite has been shown to help sustain family stability by allowing families an opportunity to plan special activities with their other children or to nurture their marriage. Furthermore, the use of respite care reduces the number of children who are placed in out-of-home settings (foster care or expensive institutions). Of the 2,286 families who have children with disabilities responding to the Family Support Survey, 38% needed temporary care to give caregivers a break (respite). Fewer than a quarter of families (23%) had respite care. Family quote:"The lack of respite makes it almost impossible for me to join the rest of my family for certain activities and it is very isolating for me. I feel that I'm missing out a large portion of my daughters' growing up. I worry about our relationships together when they are grown. It's also nearly impossible for my husband and I to go away overnight since our son is older." Ohio's current respite care programs are not available to all families with children who have disabilities. Some families are not eligible, while cost is a factor for other families. Another major issue is the lack of providers who have the necessary skills to care for a child with complex medical or behavioral issues. Ohio can help families who have children with disabilities by developing and funding a comprehensive, family driven, family controlled respite care program that is flexible, effective, affordable and accessible. In addition, Ohio needs a suitable number of licensed and trained respite providers to meet the specialized medical and behavioral needs of children for whom they will provide care. Issue 3: Providing Families with InformationFamilies with a child who has a disability need a system of services and supports that is simple to find out about, simple to understand, and simple to apply for. Explanation of the issue: A system that is simple to find out about and apply forTo get services, a family first needs accurate and timely information. But getting this information is not easy because Ohio's system is so fragmented and complicated. Family quote:"I wish information about support and assistance programs was easier to discover - many times I wonder if there are programs available ... where and how to get a van equipped for a wheel chair, adaptations for house, vehicle, other assistance for expenses." If families get the information they need, using the information properly to navigate the system can be the difference between getting services or not. Parents, however, have very little help navigating the maze of services, agencies, forms, applications, case workers, rules and regulations, etc. Family quote:"Our lives are complicated and stressful enough without having to fight our way through red tape, blank faces and lies by omission on what is available. Many families get to the point that they just give up looking. Resulting in children not getting services that would enrich their lives, families breaking up because of the stress and pressure." Single Point of EntryOhio's system is so fragmented that families spend much energy and time looking for and trying to get services. This limits the time and energy they have for raising their children. As a result, families consistently say they need a single place, a "single point of entry," where they can get accurate information that is up-to-date so they can make decisions about applying for services. Families report that often, the best and most useful information and support they get is from other families. A single point of entry can facilitate family-to-family communication. Family quotes:"There needs to be 'one place' where we can go to find ALL the resources available in Ohio that will help us care for our disabled children at home." "Family Support services were not offered or explained until I got to know another parent who has dealt with this 'system' for years. Parents need parents for support and guidance through this adventure." Universal ApplicationOhio families regularly have to make multiple applications for services, and provide the same information over and over again to different people and different agencies. This is time-consuming, frustrating and unnecessary. A single point of entry can include using a universal application that families can fill out to apply for services. With a universal application, families would give their information once, and only update it as needed. Family quote:"The paperwork process needs to be cut. We are overwhelmed with stacks of papers that everyone needs to get the simplest of services. Many times just to repeat the same information." Explanation of the issue: System that is simple to understandPlain LanguageOften, the information families get is not easy to understand. Families need information that is in plain language that they can understand and use. Family quote:"We all do not know the tech terms for certain services." Alternative FormatsSome families need information in alternative formats to accommodate their unique needs. Some families need information in large print or Braille, others need information that is readable by computer screen readers. Some families need information in languages commonly used in Ohio, such as Spanish, or information that is explained by using pictures or icons. Web AccessibilityThe access to information that families get from web sites should meet federal and state accessibility guidelines. Web sites must be accessible to those who use assistive technology, such as screen readers used by people with visual impairments. Also, web sites should be accessible to users who have dial-up connections and older computers, and compatible with any operating system or web browser. Issue 4: Giving Families ChoicesFamilies want to decide, in equal partnership with professionals, what services their family needs. Families need a system that gives them the chance to make meaningful choices among services. Explanation of the issueEach individual family must be able to choose services that fit in with what the family specifically needs. Sometimes families are offered a package of services they must accept, rather than a flexible menu from which to choose. Services that many families need, like inclusive after school programs and summer camps, are hard to find. These are supports that provide parents a needed break and keep them employed, while providing the child an opportunity to learn and be out in the community. The choice of what services Ohio offers must be family-directed and family-driven. This means that the services must be based on what families say they need. For example, if families say they need respite care, that is what the system should offer them. Families have made it clear that Ohio does not yet provide services based on what families need to keep their children safe and healthy. Family quote:"Family Resource Services makes me go through appeals to use dollars, not friendly and not helpful system. Needs improvement to allow families to use money as they need per their loved one." Families also want and need flexibility in services. Family situations change (jobs, health, finances, etc.) and as children grow, their needs change. What works today may not work tomorrow. A service system must accommodate change. Family quote:"We will continue to need added support as our daughter gets older and our ages limit our ability to physically care for her." Ohio can help prepare families for the future by creating a flexible, responsive system of supports and services. The disability market place can adopt the business models of other sectors that provide services customers want and respond to their changing needs. Issue 5: Accessing Insurance and Health CareLike any family, families raising children with disabilities need affordable insurance and quality health care. Explanation of the issue: Lack of Health CareAll families need health care for their children. In the United States, many children don't have any or adequate health care. Because children who have disabilities often have health care needs that are more complex and costly, they are even less likely to get the health care they need. The National Health Interview Survey (NHIS) and current census data show that 8% of children in this country have significant disabilities, many of whom do not have access to critical health care services they need. (Footnote: Summary of the Major Provisions of the Family Opportunity Act (also known as the "Dylan Lee James Act"), April 5, 2006, at www.aucd.org/legislative_affairs/FOA_Summary.htm The consequences of not having health insurance can be dire for a child. Yet the number of children who don't have health insurance has increased for the first time since 1998. (Footnote: See, Number of Uninsured Children Rises for First Time Since 1998, Census Data Show, Kaiser Daily Health Policy Report, September 5, 2006, at www.kaisernetwork.org) Plus, 88.3% of uninsured children in the U.S. live in households where at least one parent works full-time, year-round. (Footnote: See, No Shelter from the Storm: America's Uninsured Children, Campaign for Children's Health Care, September 28, 2006, at www.childrenshealthcampaign.org/tools/reports/no-shelter-from-the-storm.html) Explanation of the issue: Adequacy of Medical CareFamilies have difficulty finding knowledgeable medical professionals who can give their children good medical care. Families in rural areas have the added difficulty of getting to medical professionals, as they are often in cities. Families who have limited resources, education or language proficiency also can have difficulty finding medical care. Family quote:"The hardest thing has been locating services, including physicians ... who have special knowledge of the needs or treatments available. [Also] need to know companies who specialize in modifications and types of equipment available." Explanation of the issue: AffordabilityA child who has a disability often has health care needs that are costly, and often more costly than a child who does not have a disability. Paying for health care can be prohibitive for families, so families need health insurance to cover the cost. Children don't get health care for one of two reasons: either families can't get it, or they can't pay for it (for example, because health insurance premiums are too high). Families who do not qualify for public health benefits, or who have other health insurance for their children must sometimes make difficult choices. Some parents have to choose between paying for their child's health care or paying for other necessary family expenses such as food, rent, etc. Family quote:"There have been times when I have had to pick up 3 or 4 medications at $20 [copay] a piece that can get expensive. So if I don't have the $80 or $100 to pay upfront for prescriptions, does the child go without the meds? Do we go without groceries?" Other parents impoverish themselves in order to purchase health care coverage under Medicaid. Parents do not accept raises, promotions or new jobs that increase family income above the poverty line. Yet other parents remain single to keep family income under the poverty line. Recently, the U.S. Congress passed a law called the Family Opportunity Act (FOA) which could make it easier for some middle income families to get Medicaid for their children. Ohio can opt-in and implement the FOA to help families access Medicaid. Explanation of the issue: Public Health CareToday in Ohio, children with disabilities may get medical care through a number of different publicly funded programs, including Medicaid, the State Childrens Health Insurance Program (SCHIP - also called Healthchek), EPSDT (Early and Periodic Screening, Diagnosis and Treatment - also called Healthy Start), and some Medicaid Waiver programs. Other children get medical care through BCMH (Bureau for Children with Medical Handicaps). However, public health insurance programs do not cover all children, particularly those whose parents' income is too high, nor do they cover all their health care needs. Some uninsured children are eligible for, but not enrolled in, public health coverage programs like Medicaid and SCHIP. (Footnote: See "The Deficit Reduction Act of 2005: Opportunities and Challenges for ECCS Initiatives," Project Thrive, National Center for Children in Poverty, Columbia University, Mailman School of Public Health, see www.nccp.org/thrive) The way the public health benefits system (e.g. Medicaid) works also limits the choices a family can have for their child, for example, by limiting choices among medical care providers. Family quote:"Qualified reliable doctors will not take a Medicaid card ... Children with disabilities have no choice for medical care if they are on Medicaid." Explanation of the issue: Behavioral Health CareOhio does not currently have adequate health insurance for individuals with disabilities. This means that some disabilities are covered by insurance, while others are not. Some services are covered at a higher rate than others. Family quote:"I have trouble getting insurance companies to pay for therapy and behavior modification ... The very things he needs now to make him independent as an adult are being denied because insurances says therapy is not rehabilitative - he didn't have the skill before so it's not medically necessary...." Many behavioral health services are not covered by health insurance plans. Families have difficulty getting behavioral health care for a child who has behavioral health (mental health) needs. More families are looking for these services because more children are being given behavioral health diagnoses. (Footnote: Carey, Use of Antipsychotics by the Young Rose Fivefold, New York Times article, June 6, 2006.) Behavioral health needs far exceed current resources. (Footnote: Report of the Surgeon General's Conference on Children's Mental Health: A National Action Agenda, Department of Health and Human Services, 1999.) Of the families who completed the Family Support Survey, 30% needed behavior management for their children; only 14% received this service. Finally, insurance pays less (if anything) for behavioral health care than for other kinds of health care so families are less likely to afford it. Explanation of the issue: Older childrenWhile children who are younger than 18 years old can sometimes get health care, those over 18 often cannot. While these people are legally adults, the reality is that their families often take care of them if they are unable to be independent. Thus, parents of a 25 year old daughter who has multiple disabilities may provide a home and care for their daughter well into her adulthood. Family members provide informal caregiving in this situation, and may pay for medical care or insurance for the adult child. Policies and programs can support families to remain intact as their children become adults by providing access to affordable and adequate health care. Issue 6: Supporting Families With Employment OptionsFamilies need a system that lets them work, and still be able to pay for the care of their child. Explanation of the issueFamilies with children who have disabilities want the choice to work, and many do. However, the costs of caring for a child who has a disability can quickly deplete a paycheck, and often leaves families in serious financial difficulty. Families who work are often ineligible for services or benefits because their income is "too high" and they have trouble paying for "out-of-pocket" expenses. Thus, children can go without care, which stresses and de-stabilizes a family. Family quote:"I need help getting my child on Medicaid ... I am a single parent trying to work and be there for my boys' needs ... I don't want to be a welfare parent that is why I work, but we need help." Many times, families jeopardize their jobs in order to care for a child. Families may have to take time away from work to meet a child's care needs (for example, going to doctor's appointments, taking time off for a child's surgeries, meeting with school officials about behavioral health problems, etc.). Families need accommodations in the work place to answer those needs, such as flexible work schedules. Programs for their children who have disabilities would also help parents stay employed. Results of the Family Support Survey showed that summer recreation programs was a primary need: 49% (1,110 families) needed summer programs while only 11% (261 families) had a summer program for their child. 27% (608 families) needed after school programs while only 5% (261 families) had such an option. Family quote:"The additional responsibility of raising a special needs child limits your earning potential severely. The government should assist families whose lives revolve around disability." Related Topics:
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