Fostering the right solutions & connections
for more than 33 years
for more than 33 years
Join us for a live & interactive discussion with the leadership of The Association on Aging with Developmental Disabilities (AADD) Incorporated in 1994, AADD has a primary objective of bringing the aging and developmental disability fields together to create and provide best practices for people aging with developmental disabilities
Association on Aging with Developmental Disabilities https://www.agingwithdd.org/
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Chat Transcript
12:16:00 From Ken Silverstein : I work with a group of adults with disabilities, check out the interPLAYorchestra.org. Been around for over 30 years demonstrating "abilities" through making music.
12:24:03 From Steve Gurney - ProAging Community : Assisted Living, A Family Affair - Real-Life Story https://youtu.be/-8h_Z6UpXMQ
12:26:46 From Carolyn Crosby : Kindness my motto as well. I tend to correct people (a lot) with the people first concept.
12:35:21 From Steve Gurney - ProAging Community : We will discussion this question shortly - but in case anyone in the audience has resources I wanted to share it: Age is just a number. My sister is 45 and has CP, DD, and a lot of emotional and mental health issues. She lives alone, loves it, and is fiercely independent. She needs a lot of support and basically lives the life of an average 85 year old senior. She has 2-3 medical appt weekly. I am frustrated because she doesn't qualify for services she needs because "she's not old enough" such as Meals on Wheels and assisted living. She likely will never live long enough to get those serves. The current program she lives in has been wonderful and where she wishes to "age in place." The provider is adament that their program is for "independent" people with ID/DD so we have to find a new place and she isn't old enough for assisted living. The whole situation is frustrating and exhausting!
12:37:16 From Laila Ziayee : has she applied for long term Medicaid?
12:38:23 From Laila Ziayee : Which county in northern VA?
12:39:04 From Melisa Bell : Please provide more details on her current type of housing? Does she have her own apartment?
12:39:16 From ann johnson : There is an adult day care center that has assisted living attached which she may be eligible for. It is in Montgomery County MD tho
12:40:03 From Laila Ziayee : Adult and aging disability services in Fairfax County 703-324-7948
12:40:24 From Steve Gurney - ProAging Community : https://www.agingwithdd.org/
12:40:50 From Steve Gurney - ProAging Community : Association on Aging with Developmental Disabilities (agingwithdd@msn.com)
Katherine Farache (kathyf@agingwithdd.com)
Michelle Darden (michelled@agingwithdd.com)
Pamela Merkle (pamm@agingwithdd.com)
12:41:39 From Steve Gurney - ProAging Community : Marlene Riley 12:39 PM
Each area also as a Center for Independent Living CIL
Here is the CIL for Northern VA
https://endependence.org/
12:42:08 From Steve Gurney - ProAging Community : Laila Ziayee 12:40 PM
Fairfax County adult and aging disability services 703-324-7948
12:42:21 From Marlene Riley : She should also be eligible for a community-based options waiver to avoid a placement. Start getting on a wait list now since there may be a back log.
12:42:30 From Peggy Heiger to Hosts and panelists : I am in same situation as previous person in chat, as my sister-in-law will be coming to live with us (we both approaching 60) as mom is over 80 now. We are in MD and she is on Medicaid, but I'm looking for some programs that may help me with some assets as I will have to quit my own business as a caregiver and she will be my FT client. Thank you
12:42:35 From Steve Gurney - ProAging Community : Marlene Riley 12:41 PM
She should also be eligible for a community-based options waiver to avoid a placement. Start getting on a wait list now since there may be a back log.
12:43:24 From Steve Gurney - ProAging Community : Here is another person seeking help: I am in same situation as previous person in chat, as my sister-in-law will be coming to live with us (we both approaching 60) as mom is over 80 now. We are in MD and she is on Medicaid, but I'm looking for some programs that may help me with some assets as I will have to quit my own business as a caregiver and she will be my FT client. Thank you
12:44:40 From ann johnson : try adult day care. Age is not a factor. Medicaid pays for it also.
12:46:30 From Ateba Evina to Hosts and panelists : What is the average life expectancy of a person with IDD?
12:48:07 From Laila Ziayee : check with your local social services for a long term care Medicaid assessment. The assessment is done by the nurse and local agency SW. The assessment is called a UAI. If she qualifies, she can get help in the home from an agency or attend the adult day care paid by medicaid.
12:49:24 From Steve Gurney - ProAging Community : from a previous slide MEAN LIFE EXPECTANCY OF A PERSON WITH A DEVELOPMENTAL DISABILITY
12:50:43 From Steve Gurney - ProAging Community : Another person who needs ideas and resources: My 48 year old son has Aspergers syndrome and is fairly functional. He lives in my basement, works full time as a computer technician for Courts (for a contractual company with no benefits). He drives and has friends from a band who he socializes with on weekends. He hoards electronics so my basement is almost uninhabitable. He also has two storage rooms which I pay for. He is $50K in credit card debt. I started a bankruptcy proceeding for him. He also had $50k in a pawnshop reduced to $5K.
12:52:59 From Steve Gurney - ProAging Community : More information from our first challenge: yes, she receives Medicaid and has a waiver and she resides in City of Alexandria. I think the place where she lives has a licensing requirement and may be part of the resistance to keeping her there. I wish to remain anonymous to respect my sister's privacy. Thanks Steve!
12:53:39 From Marlene Riley : For person in Maryland
12:53:41 From Marlene Riley : https://aging.maryland.gov/Pages/maryland-access-point.aspx
12:54:00 From Peggy Heiger to Hosts and panelists : thanks much!
12:54:30 From Marlene Riley : Not sure which County you are in Maryland. I am an OT in Baltimore Co
12:54:48 From HEATHER SURI : That "shield" approach is SO important. SO IMPORTANT.
12:56:12 From ann johnson : Pam I love your enthusiasm, energy and love for this population. I was a hospice social worker and one year I had 3 Downs patients. I ran into situations with the caregivers who had been with the patient for years and having a hard time with the dying process. I did a lot of teaching, hand holding and sharing love.
12:57:29 From Steve Gurney - ProAging Community : My 48 year old son has Aspergers syndrome and is fairly functional. He lives in my basement, works full time as a computer technician for Courts (for a contractual company with no benefits). He drives and has friends from a band who he socializes with on weekends. He hoards electronics so my basement is almost uninhabitable. He also has two storage rooms which I pay for. He is $50K in credit card debt. I started a bankruptcy proceeding for him. He also had $50k in a pawnshop reduced to $5K. Continued from above. I’m 78 years old and care for my 96 yr. old mother with dementia in a nursing home. I’m running out of savings and will need to sell my house. I worry about my son’s future after I’m gone. My lawyer says I won’t succeed in getting a conservancy for him. My daughter’s will care for him only if they have a conservancy. They think I enable him. I’m in Northern Va. Alexandria
12:57:53 From Carolyn Crosby : That is AMAZING.
12:58:34 From Marlene Riley : For son with Aspergers
12:58:35 From Marlene Riley : https://www.linkedin.com/in/zosia-zaks-a72536195/
12:58:53 From Marlene Riley : Zoysia Oaks is based in Baltimore
12:59:17 From Marlene Riley : Meant *Zaks*
12:59:48 From Susan I Wranik : Hello Everyone!
Thank you, Steve for a great program!
Susan I Wranik, MS, MA CCC-SLP. Speech-language pathologist working with IDD community in DC.
Also providing in-home/online care for the assessment and treatment of speech, swallowing and memory (the dementias) and will to live. Special focus on Parkinson’s for vocal strengthening. Licensed to practice in the DMV. susan@speakskill.com 301 520 2332
SOS: Here to Help
12:59:58 From Katherine Farache to Hosts and panelists : (314) 647-8100 info@agingwithdd.com
13:00:04 From Susan I Wranik : 4301 Connecticut Avenue, NW, Suite 310, Washington, DC 20008
W: 202-448-1458 | Mobile: 202-270-1256 | Fax: 202-448-1451
Email: pholton@dcqualitytrust.org
www.dcqualitytrust.org
Follow us on facebook
# 9339 in the United Way Campaign and DC One Fund
# 33317 in the Combined Federal Campaign
13:00:49 From Susan I Wranik : DC QUALITY TRUST is a superb resource.
13:00:58 From Marlene Riley : Provider in Baltimore, MD marleneriley@otassociatestowson.com
13:01:03 From Marlene Riley : OT
13:08:05 From Steve Gurney - ProAging Community : There are superb residential organizations in the DC area: RCM and ILS to name a few for those differently abled.. Waiver and ICF. Check into them.
13:08:32 From Fairfax Building: : This was great - thanks!!
13:08:32 From Susan I Wranik : God bless the Midwest!
13:09:32 From Carolyn Crosby : Thank you!!
Resources From Karen L. Morgret, MGA, CESP, Director of Vocational Services and Quality Assurance
This might be a resource for those in Northern Virginia with developmental disabilities.
CURRENT ISSUE
State of MD-DC-VACURRENT ISSUE
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