FOP Adults in Transition: A List of Resources
by Jeri Licht
IFOPA Member
As you navigate through the programs and services, be aware of Jo Holzer's comments in her workshop at the 1998 "Gateways to Independence Symposium for Adults with FOP" held in New Jersey: "Knowing your rights is not enough." This means that you must be persistent, take action, and, at times, obtain advocacy services to secure services and programs that will assist you to live independently.
Many adults with FOP have encountered difficulty in accessing independent living services; at the same time, many of them have succeeded in obtaining the services they need by pursuing appeals as long as it took to overcome denials, and not giving up.
In addition to the resources listed below, we also recommend contacting your State and Federal Representatives to help you overcome obstacles you encounter in communicating with agency and program staff.
OLMSTEAD SUPREME COURT DECISION
What is it?
In July 1999, the Supreme Court issued the Olmstead v. L. C. decision. The Court's decision in that case clearly challenges Federal, state, and local governments to develop more opportunities for individuals with disabilities through more accessible systems of cost-effective community-based services.
The Olmstead decision interpreted Title II of the Americans with Disabilities Act (ADA) and its implementing regulation, requiring States to administer their services, programs, and activities "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." (Excerpt from the Centers for Medicare and Medicaid Services (CMS) website at www.cms.hhs.gov/Olmstead/default.asp)
Medicaid can be an important resource to assist States in meeting these goals. However, the scope of the ADA and the Olmstead decision are not limited to Medicaid beneficiaries or to services financed by the Medicaid program. The ADA and the Olmstead decision apply to all qualified individuals with disabilities, regardless of age.
The Centers for Medicare and Medicaid Services (CMS), formerly the Health Care Financing Administration (HCFA), has begun consultation with States and with people with disabilities. CMS plans to review relevant Federal Medicaid regulations, policies and previous guidance to assure that they are compatible with the requirements of the ADA and Olmstead decision, and facilitate States' efforts to comply with the law. CMS is working closely with other involved Federal agencies to ensure that these reviews are consistent with the requirements of the statute and are focused on the needs of persons with disabilities.
How can it help me?
The Olmstead Decision can guarantee the funding for services to allow you to live in your residence instead of being forced to move to a nursing home to get care assistance.
How does it apply to my situation/where I live?
This website will tell you how your state complies with the Olmstead Act:
http://www.ncsl.org/programs/health/forum/olmstead/2003/olmstead_main.htm
What do I need to do to obtain/access applicable services?
Depending on your state's plan to implement the provisions of the Olmstead Decision, you may need to contact your local Independent Living Center, Protection and Advocacy, or State and Federal legislators to assist you in obtaining Medicaid waivers to access these services.
SOCIAL SECURITY
What is it?
Social Security disability benefits are paid under two programs: the Social Security disability insurance program and the Supplemental Security Income (SSI) program. If you qualify for SSI, you automatically qualify for Medicaid.
How can it help me?
Social Security Income benefits provide basic living expenses for food, clothing and shelter.
How does it apply to my situation/where I live?
Each situation is evaluated by the Social Security Representative. To be eligible for SSI you must demonstrate that you have a disability that meets the Social Security guidelines. You need to have limited resources (savings, income, etc.) that fall within the Social Security guidelines, and in many cases you cannot be a dependent of your parents. Every situation is different. Contact the Social Security office in your area for further information, or call Social Security at 1-800-772-1213 (phone hours 7-7 Mon through Fri.) See also www.ssa.gov/disability.
What do I need to do to obtain/access applicable services?
Call the 800 phone number cited above and you will be directed to your local Social Security office. Be prepared to provide your birth certificate, evidence of US citizenship or that you are a lawfully admitted immigrant, and documentation of your disability with the date of onset of the disability.
MEDICAID
What is it?
Medicaid is a program that pays for medical assistance for certain individuals and families with low incomes and resources. This program became law in 1965 and is jointly funded by the Federal and State governments (including the District of Columbia and the Territories) to assist States in providing medical long-term care assistance to people who meet certain eligibility criteria. Medicaid is the largest source of funding for medical and health-related services for people with limited income.
Medicaid eligibility is limited to individuals who fall into specified categories. The federal statute identifies over 25 different eligibility categories for which federal funds are available. These categories can be classified into five broad coverage groups: pregnant women, children and teenagers, persons who are aged, blind and disabled. Within these groups, certain requirements must be met. Requirements may include limited income and resources (like bank accounts, real property, or other items that can be sold for cash), and whether you are a U.S. citizen or a lawfully admitted immigrant. The rules for counting your income and resources vary from state to state and from category to category. There are special rules for those who live in nursing homes and for disabled children living at home.
In general, you should apply for Medicaid if your income is low. Even if you are not sure whether you qualify, if you or someone in your family needs health care, you should apply for Medicaid and have a qualified caseworker in your state evaluate your situation. The following websites provide Screening Tools to help you see if you may be eligible for a variety of governmental programs: www.govbenefits.gov and http://www.benefitscheckup.org/
(Excerpt from Medicaid website, www.cms.hhs.gov/medicaid/)
How can it help me?
Medicaid is the basic entitlement program for funding your health care needs, durable medical equipment, and home care services.
What do I need to do to obtain/access applicable services?
Call Social Security at 1-800-772-1213 or see www.cms.hhs.gov/medicaid to obtain information about services in your area.
PERSONAL CARE ASSISTANCE
What is it?
Personal care assistance is having someone work for you to help you with the tasks of daily living, such as bathing, toileting, transferring, dressing, cooking, laundry, housekeeping and errands. Medicaid recipients may receive funding for personal care assistance. These are State programs. Some States receive Federal matching funds to provide these services, while other States utilize the Medicaid Waiver to offer in-home care services "to certain persons with chronic impairments."
(Excerpt from Medicaid website, www.cms.hhs.gov/medicaid/)
How can it help me?
The regulations covering personal care services are very complex. The excerpt below from the website page, "Medicaid-A Brief Summary," (http://www.cms.hhs.gov/ publications/overview-medicare-medicaid/default4.asp) is offered as an introduction:
Within broad Federal guidelines and certain limitations, States determine the amount and duration of services offered under their Medicaid programs. States may limit, for example, the number of days of hospital care or the number of physician visits covered. Two restrictions apply: (1) limits must result in a sufficient level of services to reasonably achieve the purpose of the benefits; and (2) limits on benefits may not discriminate among beneficiaries based on medical diagnosis or condition.
In general, States are required to provide comparable amounts, duration, and scope of services to all categorically needy and categorically related eligible persons (the 5 categories are listed above under "Medicaid: What is it?"). There are two important exceptions: (1) Medically necessary health care services that are identified under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program for eligible children, and that are within the scope of mandatory or optional services under Federal law, must be covered even if those services are not included as part of the covered services in that State's Plan; and (2) States may request "waivers" to pay for otherwise uncovered home and community-based services (HCBS) for Medicaid-eligible persons who might otherwise be institutionalized. As long as the services are cost effective, States have few limitations on the services that may be covered under these waivers (except that, other than as a part of respite care, States may not provide room and board for the beneficiaries). With certain exceptions, a State's Medicaid program must allow beneficiaries to have some informed choices among participating providers of health care and to receive quality care that is appropriate and timely.
What do I need to do to obtain/access applicable services?
For further information, call the Social Security number at 1-800-772-1213 or visit the Medicaid website: www.cms.hhs.gov/medicaid
DEPARTMENT OF VOCATIONAL REHABILITATION
What is it?
The Rehabilitation Services Administration (RSA) provides funds to State Departments of Rehabilitation to assist individuals with disabilities to obtain employment and live more independently through provision of such supports as counseling, medical and psychological services, job training, and other individualized services. By becoming a client of your local vocational rehabilitation office, you will tap into a wealth of resources related to employment options for people with disabilities, including the potential to receive funds for tuition, adaptive equipment, and transportation.
How can it help me?
Each State Vocational Rehabilitation Office has its own regulations and policies. It is important to note that RSA policy stipulates that priority of employment related services is given to individuals who are significantly disabled.
The following list of possible services is excerpted from the California State Department of Rehabilitation Website:
Counseling and Guidance
- Referrals and assistance to get services from other agencies
- Job search and placement assistance
- Vocational and other training services
- Diagnosis and treatment of physical and mental impairments
- Maintenance for additional costs while participating in the IPE (Individual Plan for Employment)
- Transportation, if needed
- On-the-job or personal assistance services
- Interpreter services
- Rehabilitation and orientation/mobility services for individuals who are blind
- Occupational licenses, tools, equipment, initial stocks and supplies
- Technical assistance for self-employment
- Rehabilitation assistive technology
- Supported employment services
- Services to the family
What do I need to do to obtain/access applicable services?
Vocational Rehabilitation is in the phone directory under State Government, or use the search engine Google at www.google.com. Enter "Department of Vocational Rehabilitation + your state (for example, "California") to find the website of your state Department of Vocational Rehabilitation.
ADMINISTRATION ON DEVELOPMENTAL DISABILITIES
(US Department of Health and Human Services)
What is it?
The Administration on Developmental Disabilities (ADD) is the U.S. Government organization responsible for implementing the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the DD Act. ADD and its staff and programs are part of the Administration for Children and Families of the U.S. Department of Health and Human Services.
Developmental Disabilities are physical or mental impairments that begin before age 22 and alter or substantially inhibit a person's capacity to do at least three of the following:
- Take care of themselves (dress, bathe, eat, and other daily tasks)
- Speak and be understood clearly
- Learn
- Walk/ Move around
- Make decisions
- Live on their own
- Earn and manage an income
How can it help me?
The DD Act requires ADD to ensure that people with developmental disabilities and their families receive the services and supports they need and that they participate in the planning and designing of those services.
What do I need to do to obtain/access applicable services?
You cannot be denied the opportunity to submit an application. However, the first application is routinely denied and you will most likely have to appeal the denial. Appeal is based on having a level of disability equally severe to the disabilities that your State identifies as "developmental disabilities." It may be necessary for you to obtain legal or advocacy assistance to have your denial overturned and your disability acknowledged as "equally severe."
Your State Developmental Disability Department is listed in the phone directory under State Government, Developmental Disabilities; or go to http://www.ddrcco.com/states.htm
PROTECTION AND ADVOCACY (P&A)
What is it?
Each state has a Protection and Advocacy unit or department to empower, protect, and advocate on behalf of persons with developmental disabilities.
How can it help me?
If you are having problems obtaining disability related services from a government agency, your State Protection and Advocacy department offers information and referral services for legal, administrative, and other remedies to resolve problems for individuals and groups of clients.
What do I need to do to obtain/access applicable services?
See http://www.hud.gov/offices/fheo/disabilities/protect.html, or use the search engine Google at www.google.com. Enter "Protection and Advocacy" + your state (for example "California") to find the website of your state's program.
INDEPENDENT LIVING CENTERS (ILC'S)
What is it?
Independent Living Centers are typically non-residential, private, non-profit, consumer-controlled community-based organizations that provide services and advocacy by and for persons with all types of disabilities. Their goal is to assist individuals with disabilities to achieve their maximum potential within their families and communities.
(Excerpt from the ILUSA website, www.ilusa.com/links/ilcenters.htm)
How can it help me?
In addition to providing local information and referral sources, Independent Living Centers also serve as a strong advocacy voice on a wide range of national, state and local issues. They work to assure access to housing, employment, transportation, communities, recreational facilities, and health and social services.
(Excerpt from the ILUSA website, www.ilusa.com/links/ilcenters.htm)
What do I need to do to obtain/access applicable services?
To obtain the address and phone number of your local independent living center, go to the website: www.ilusa.com/links/ilcenters.htm.
IFOPA RESOURCES
See the IFOPA Catalogue of Resources to find resources and items that have been used by people who have FOP. Resources pertaining to independent living are in the "Informational Resources" section titled "Advocacy & Government." Please contact the IFOPA for further assistance.
