Since I do not have a connection with Autism myself I offered my friends who know more about Autism than I do the chance to guest-blog here. Monica is the parent of an awesome son with Autism and a fellow Partners in Policymaking grad (from my class, actually!) She is also the host of Disability News and Views Radio. This article of hers was originally published by Autism Today. PS: The house in this picture is for sale so if you are looking to move to Bufflo, NY leave a comment!
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 firstname.lastname@example.org (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)
NATIONAL RESOURCES 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: www.worldramp.net/brassring/
Disability Funding News is a national newsletter covering federal and private funding for people with disabilities. Phone 1-800-666-6380 Website: www.cdpublications.com/funding/dfn.htm
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: www.inhisname.org/ email email@example.com 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: www.wish.org, email MAWFA@wish.org
(Correction: They actually grant wishes to children between the age of 2-1/2 and 18 with life-threatening medical conditions.)
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: www.naric.com
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: www.nosscr.org. and email firstname.lastname@example.org
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: www.disabilityfacts.com and email email@example.com 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: www.sunshinefoundation.org, email firstname.lastname@example.org
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.