Finances an Added Burden for the Disabled and Their Families

By Monica S. Moshenko
Power Advocates, Inc.

For those of you who have a child with a disability, or are an adult with a disability, finances play an integral role in the services and supports that are needed. There were times in the last few years, when I made choices to pay for a therapy my son needed, instead of paying the phone bill or car payment because the health insurance company often limits the frequency or doesn’t even cover it.

I have known far too many families who had to sacrifice so much to ensure that their child receives the interventions and attention they so desperately require. Some parents have had to refinance their homes and often go without the many “extras” that many others seem to have- the second car, vacations, and even going out to restaurants, to pay for ongoing medical costs which usually aren’t covered by typical HMO’s. For the parent or adult who doesn’t have any health insurance, there are increased challenges and stresses accompanied by this problem, making life extremely difficult. There are resources that parents of disabled children and disabled adults can apply for in New York State, as well as national resources I want to provide for you.

One program called the “Medicaid HCB Waiver Program” which allows States to take Medicaid funds that were previously only available to institutions, and apply them to community and home-based programs.

According to the U.S. Dept. of Health and Human Services, “Medicaid’s home and community-based services waiver program affords States the flexibility to develop and implement creative alternatives to institutionalizing Medicaid-eligible individuals.” Many individuals can be cared for in their homes and communities, preserving their independence and ties to family, and friends, at a cost no higher than that of institutional care. When these programs are provided, the individual also becomes a contributing member of the community, thereby enriching all of our lives.

Some of the services that maybe provided without prior approval of the Federal government through this program include: Case Management Services, Homemaker Services, Home Health Aide Services, Personal Care Services, Adult Day Health Habilitation and Respite Care Services.

Other services which maybe provided with prior approval include: Transportation, In-Home Support, Meal Services, Special Communication, Minor Home Modifications, and Adult Day Care.

To apply for the HCB Medicaid Waiver, you need to have documented information about the disability, along with information of how the disability affects the person’s daily living. Your income is not a factor when applying for the HCB waiver.

Waiver services may be provided to the elderly and disabled, the physically disabled, the developmentally disabled and mentally ill. Waivers may also be targeted to individuals with a specific illness or condition, such as technology-dependent children or individuals with AIDS.

Under the waiver program, States can make home and community based services available to individuals who would otherwise qualify for Medicaid only if they were in an out of home setting.

Contact a Caseworker from an agency such as People Inc. or Heritage Centers (see the list of resources which follow) to begin the application process, which can take several months. Once the application is completed, it is submitted to a review committee at the WNY DDSO. When a decision is made, a letter is then sent to the applicant and the agency that you are working with. If you are denied, you can always apply again, perhaps submitting more specific information or you can request a Fair Hearing for further review of the application.

If you have an adult child with a disability, they may be eligible for either SSI (Supplemental Security Income), or SSDI (Social Security Disability Insurance) regardless of your income or assets. Both of these programs provide money to people with disabilities who aren’t capable of “substantial gainful activity” or SGA. If a physical or mental impairment prevents your adult child from doing any job that will enable him or her to independently earn $500 or more per month, he or she may be eligible for either SSI or SSDI if other requirements of the program are also met.
§ SSI requires that in addition to being disabled and incapable of SGA a person must also be poor. SSI sets limits on the amount of money one can earn in a month (countable income) and on the value of money or property owned (countable resources). It is important to note that once a child reaches 18 years of age, his or her parents’ income and resources are not counted for SSI eligibility.

SSDI is only available to people (including their dependents) who have paid into the Social Security system by working a required amount of time. Dependent adult children are eligible for benefits under their parents’ work record. Dependent adult children are defined as becoming disabled prior to the age of 22, single, and incapable of substantial gainful activity. If the parent fulfilled the required SSDI work time and then dies, retires, or becomes disabled, a dependent adult child will receive cash benefits based on that parent’s earnings. It is important to note that the child does not need to be poor to receive the cash benefits, nor does the child have to live at home. (Excerpted from “Adult Child Benefits: Social Security 101,” by Theresa Varnet, Exceptional Parent, September 1997)

There are a variety of work incentive programs for individuals with disabilities who wish to work without immediately jeopardizing their SSI/SSDI benefits. The Work Incentives Improvement Act (WIIA), introduced in Congress on January 28, 1999, would allow beneficiaries of SSI and SSDI to work without losing their Medicaid or Medicare benefits. More information about the details of these programs, eligibility requirements and work incentives can be obtained from a variety of sources including the Social Security Administration at 1-800-772-1213 (TDD: 1-800-325-0778) and the NYS Dept. of Labor at (518) 485-6176 or email (New York Works: Self-Sufficiency through Employment Initiatives). This program is being offered in Buffalo.

I have listed local and national agencies that provide information, support and assistance. Local churches should be providing some assistance to the disabled as well (i.e. food, clothing, counseling, financial)

ACE Employment Services, 66 Englewood Ave., offers supported employment services to individuals with severe and persistent mental illness. Services include exploration of job interest, resume writing and interview preparation, job development and placement assistance. For information, call 832-2141.
Agape Parents Fellowship, 3280 South Park Ave., Lackawanna, provides service coordination, education advocacy and other supports for families with disabling conditions. For more information about services for regularly scheduled parent support group and Bible study meetings call 827-5407, Fax: 827-5913 E-mail:

Autistic Services Inc offers a full-year school, and provides residential, adult, therapeutic recreational, and vocational job services, as well as family support services. The agency provides a continuum of services, from birth to senior citizen years. Autistic Services is located at 200 Bryant & Stratton Way, Williamsville NY 14221 (716) 631-5777

Central Referral Services has completed its DD Info Link. DD Info Link is a searchable directory of programs, available online, to people with developmental disabilities and their families. The directory can be accessed, free of charge, at For more information, call 851-5420.
Community Services for the Developmentally Disabled offers Project COACH (Community Outreach and Crisis Hotline) for individuals with a developmental disability or their family members. Project COACH offers telephone support to individuals needing information, crisis intervention, counseling or advocacy. For information, call 877-1111.

Deaf Adult Services Inc., 665 Hertel Avenue, is open from 9 a.m. to 4 p.m. Monday to Friday for deaf and hard-of-hearing individuals in need of assistance. Walk-in clients will be assisted or referred to appropriate agencies based on their needs. For information call 874-6011 (v) or 874-6390 (tty). Fax: 874-6173 E-Mail:

Epilepsy Association of Western New York, 339 Elmwood Ave., Supportive Employment Services, is offering comprehensive job search assistance: including assessment, resume and cover letter writing, interview skills, job coaching, transportation for interviews and other job search activities. For information, call 883-5936.

Guild Care is an adult day health program helping adults, 18 and older, with medical and vision needs maintain independence. Located at 1170 Main St., its services include nursing supervision and medication assistance and teaching; personal care; dietary consultation; physical, occupational and speech therapy; assisted transportation; vision rehabilitation, social work; activities and outings, with snack and hot lunch daily. Medicaid or private pay is accepted; new referrals welcomed. For more information, call 885-8041.
Heritage Centers offers a wide variety of services to developmentally disabled individuals of all ages and their families. OUR MISSION IS TO CREATE OPPORTUNITIES FOR GROWTH, INDEPENDENCE, PRODUCTIVITY, CHOICE, AND SATISFACTION FOR CHILDREN AND ADULTS WITH DISABILITIES AND THEIR FAMILIES BY PROVIDING COMPREHENSIVE QUALITY SERVICES. Heritage Centers are located at 2643 Main Street, Buffalo NY 14214
(716) 833-8601 for information. Online information .

Neighborhood Legal Services (NLS) is a not-for-profit agency located in Buffalo, New York. NLS provides free legal services to persons with low-income and persons with disabilities. It also provides a wide range of technical assistance and support services. While the majority of its services are provided within Erie County, New York, NLS also provides disability-related services for all of Western New York and operates both a Statewide and National Assistive Technology Advocacy Project to assist persons with disabilities and the advocates and agencies that serve them.) For people living in Erie County, contact Neighborhood Legal Services, Inc. by calling (716) 847-0650.

People Inc., a leading non-profit human services agency in Western New York. Through a variety of services including residential, employment, community outreach, health care and recreation programs, we help seniors; families and people with disabilities live more healthy, independent and productive lives. They are located at 1219 N. Forest Rd., Williamsville, NY 14221 (716) 634-8132 Online information

Southeast Community Work Center provides services to help people with developmental disabilities lead productive, independent and fulfilling lives. They are located at 181 Lincoln Street, Depew NY 14043 (716) 683-7100 Fax: 683-7086 E-mail:

The Community Employment Office is an alliance of public and voluntary agencies, with United Cerebral Palsy of Western New York serving as lead agency, working together to promote integrated employment opportunities for people with disabilities in Erie County and Western New York region. Persons with disabilities and who are looking to enter the job market, call 684-3986.

New York State School for the Blind, located in Batavia, provides education to legally blind persons, ages 5-21, who have multiple disabilities. The School provides a learning environment that puts achievement and independence within the reach of each student. Program options include day school, five-day residential and seven-day Intermediate Care Facility. For information, call 343-5384, Ext. 276, e-mail or go online at

The TRAID Project (Technology Related Assistance for Individuals with Disabilities), from the New York State Office of Advocate, has opened a satellite office in Angelica, New York and will serve Allegany, Cattaraugus and Chautauqua counties. The TRAID Project provides statewide coordination of assistive technology activities for people with disabilities, fosters development of State and Federal policies, provides information, referral, training’s and technical assistance, advocacy on how to access and use assistive technology devices and services. For information, call 446-3980 or by e-mail at:

VA Regional Office – Department of Veterans Affairs, 111 West Huron Street, Buffalo NY14202 For Vocational Rehabilitation for Service Disabled Veterans and for Special Home Adaptation in Buffalo call, 846-5191 or 1-800-827-0619

Western New York Independent Living Center, 3108 Main St., assists developmentally disabled individuals in securing appropriate services that can aid a person’s efforts to live independently. Services include Medicaid service coordination; individual support services; financial assistance, such as rent subsidies and partial funding for home modifications; and family support services, which can provide free transportation. For information, call 836-0822, Ext. 107.

Western New York DDSO (the western district of the NYS Office of Mental Retardation and Developmental Disabilites) provides services to individuals who have developmental disabilities in a variety of settings and locations within a geographic area that includes Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Niagara and Orleans Counties. The WNYDDSO operates a variety of residential services including group homes, supervised apartments, individual service environments, Individual Residential Alternatives, family care and family support. Services are also provided to families who have a member with developmental disabilities living at home. WNY DDSO offices are located at 1200 East & West Road West Seneca, NY 14224 Phone: (716) 674-6300

NYS Department of Family Assistance, Western New York Office of Temporary and Disability Assistance, P.O. Box 5030 Buffalo, NY 14205. Its primary function is to promote greater self-sufficiency of the state’s residents through the efficient delivery of temporary assistance, disability assistance, and the collection of child support. Phone (716) 847-3927

The Buffalo, New York Social Security Office is located in the Dulski Federal Building in Downtown Buffalo just two blocks north of the Buffalo City Hall. We are at the corner of Delaware Ave and West Huron St.. Our address is 111 West Huron St., Room 1200, Buffalo, NY 14202. We administer various Social Security programs including retirement, survivors, disability,Medicare and family benefits. We also administer Supplemental Security Income (SSI), a program that provides basic income to people 65 or older, disabled, or blind who have limited income and resources. In addition to these services, we also make referrals to other agencies and organizations that can provide assistance. Call (800) 772-1213 between 7:00 a.m. and 7:00 p.m. (or by TDD call (800) 325-0778). Most business can be completed by phone and appointments can be made for many visits to our office. For local callers, the Buffalo office can also be reached at (716) 551-3961, TDD (716) 551-3837, and FAX (716) 551-4368, between 9:00 a.m. and 4:00 p.m.

The Brass Ring provides grants to fulfill the dreams of children who suffer from a life threatening or terminal illness. Phone 1-800-666-WISH Website:

Disability Funding News is a national newsletter covering federal and private funding for people with disabilities. Phone 1-800-666-6380 Website:

In His Name Ministries, an interfaith, non-profit charitable organization that addresses the news of the disabled, elderly and the struggling single.
Phone 1-405- 706-6295 Website: email organization that addresses the financial needs of the disabled, elderly, and struggling single

The Make-A-Wish Foundation grants wishes to children under the age of twelve with life threatening illnesses. Phone 1-800-722-9474, Website:, email
National Rehabilitation Information Center (NARIC) provides referrals for persons with disabilities to organizations that may financially assist them in a variety of ways (i.e. education). Phone 1-800-346-2742 Website:

National Organization of Social Security Claimants Representatives (NOSSCR) is an association of attorneys and paralegals who represent Social Security and Supplemental Security Income claimants. Phone 1-800-431-2804, Website: and email

Physician’s Disability Services, Inc. is a publishing company that helps people with disabilities prove their Social Security disabililty claims. Phone 1-410-431-5279 Website: and email
The Sunshine Foundation grants wishes to chronically, and terminally ill, disabled and physically abused children ages 2 ½ to 22. Phone 1-941-424-4188 Website:, email

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