DD Council Connection - January 2020

logo of dd council connection newsletter bannerDD Council Connection is a way for the Ohio Developmental Disabilities Council to introduce to you our Council members, provide updates on the work we do and the grant projects we manage, and inform you on the activities and initiatives of Ohio's community of self-advocates and others who work on behalf of people with disabilities and their families. We hope you enjoy this e-newsletter. Please share your thoughts, story ideas and event calendar submissions with us at DDCInfo@dodd.ohio.gov.

This month's articles include:

Last Chance to Provide Your Input!

Logo with the words 5-Year State Plan for the Ohio Developmental Disabilities Council

NOW is your chance to share what matters to you! The Ohio DD Council’s five-year state plan survey is open and collecting input on issues that matter to people with developmental disabilities, their families and other community stakeholders.

Hearing from individuals is important because the survey results will be used to develop the next five-year plan (2022 - 2027) for the DD Council. This plan allows Council to develop grants and projects that benefit the developmental disability community across the state based on the issues that are important to you.

Take the survey by January 31, 2020: https://www.surveymonkey.com/r/RGMMWWT

The Center for Dignity in Healthcare Seeks Applicants for Advisory Board and Subcommittee

The Center for Dignity in Healthcare for People with Disabilities is searching for a variety of applicants with experience, interest and/or knowledge in the topic areas of prenatal diagnostics, organ transplantation, suicidality/mental health issues, and end-of-life care. Self-advocates, family members, healthcare and oPicture of a group of people sitting around a table talking.ther professionals are encouraged to apply. Application deadline is Friday, February 7, 2020.

For more information on this opportunity: download the PDF

To apply: complete the online application

Paper applications and assistance/accommodations to complete the application are available by request. Contact Kara Ayers by email at kara.ayers@cchmc.org or by phone at 513-803-4402.

“Future is Now” Sessions Focus on Aging Caregivers

The Future is Now is a multi-part series designed to help older caregivers and their family members make plans for the future. Throughout the series, families will create a letter of intent, which is a non-legal document that captures family desires and goals for the future. Creating a letter of intent helps families gain peace of mind that comes with having a plan for their loved one.

These sessions, held in Cincinnati, are specifically designed for families that include a member with a disability whose caregiver is age 60 or older. All members of the family are encouraged to attend, including caregivers, the family member with a disability, siblings, and close family friends.

The Future is Now - Future Planning Sessions for Families with an Older Caregiver

Caregivers can choose from one of the following dates in 2020:

APRIL (2-part series)
April 18 and 25 from 9 AM to 3 PM

JUNE (4-part series)
June 23, 25, 30 and July 2 from 6 to 8:30 PM

SEPTEMBER (4-part series)
September 15, 17, 22, and 24 from 6 to 8:30 PM

For more information, including how to register: https://ddc.ohio.gov/Portals/0/future-is-now-2020-schedule.pdf

The Future is Now is a project of the Hamilton County Developmental Disabilities Services funded by the Ohio Developmental Disabilities Council under the Developmental Disabilities Assistance and Bill of Rights Act. To learn more information about the grant, check out Hashtag Support for Aging Caregivers.

STABLE Accounts are Here to Stay

By Paul Jarvis, DD Council Public Policy Staff

For the past several years, YouGov has conducted a survey to help identify the most popular New Year’s Resolutions. It seems the same three resolutions top the list every year: eat healthier, lose weight, and save more money.

For people with developmental disabilities and their families, the third resolution mentioned can get a little tricky. We know that having access to money can lead to the loss of programs or services that individuals with developmental disabilities rely on every day. That is, of course, unless the individual or family has set up a trust or some other income or asset option that is available to them.

I’m not going to talk about all of those options here. If you want to know about them, I encourage you to take a look at DD Council’s booklet, Planning for Bright Tomorrows: Estate and Future Planning, which gives a pretty good description of the many options available to individuals and families to protect their financial resources.

Included in that book is a section on one of the newest programs available to individuals with developmental or other disabilities to save money. The STABLE Account Program was created in Ohio in 2016. And while the program has been around now for nearly four years, there is still a lot of reluctance on the part of individuals and families to set an account up. In fact, in my work with the DD Council, I get more questions about how this program works than I do about almost any other topic.

About STABLE Accounts

STABLE Accounts are made possible by a change in the federal law. The Achieving a Better Life Experience (ABLE) Act allowed states to create special accounts for people with disabilities. The best part of these new accounts is that the money put into them cannot be counted as a resource for determining eligibility in government programs or services. This means that individuals with disabilities who have a STABLE Account could avoid going over the $2,000 asset limit that Social Security and Medicaid have placed on them.

Perhaps even better, however, is that funds in a STABLE Account can be used to support the person with a disability to live in the community. The federal guidelines allow for STABLE Accounts to even pay for housing expenses of the individual with a disability, so long as the housing expense is paid in the same month the money is withdrawn. Any qualified disability expense to maintain or improve the health, independence, or quality of life of the individual is allowed. This could even include food, clothing and personal care items.

Know the Facts about STABLE Accounts

STABLE Accounts logo

About a year ago, I became aware that a parent of an adult child with a disability was looking at this option for their child. Because anyone can contribute to a STABLE Account, this mom was looking at helping her son out during the federal government shutdown. She was afraid the shutdown would lead to a loss in food benefits under the Supplemental Nutrition and Assistance Program (SNAP). In fact, the government was warning that SNAP benefits would be suspended for a period of time and that recipients should plan accordingly. Without a STABLE Account, any support this mom provided to her son to help him stay in the community would have eventually been counted as a resource.

What’s even more infuriating about this story is that when the mom inquired with her contact at the Social Security Administration, she was told, WRONGLY, that the STABLE Account would be counted as a resource for her son’s eligibility. We took action to educate the Social Security staff person, but I can only wonder how many more people are being told the wrong information about STABLE Accounts.

That’s why the State Treasurer’s Office continues to travel the state to conduct education sessions about these accounts and how they can help people with disabilities. According to State Treasurer Robert Sprague, the total number of active STABLE accounts exceeded 14,000 in 2019, with $100 million in total participant contributions.

“With your help and the support of advocates across Ohio, we’re going to reach even more individuals and have a greater impact in 2020,” said Sprague. “While a great deal of progress has been made since the ABLE Act became law, I can assure you we’re just getting started.”

I hope so. The more that families and individuals get to know about these accounts, it seems the more they are willing to follow through with them. And due to the excellent federal guidance on how these accounts may be used, more and more people with disabilities and their families are realizing that STABLE Accounts can be an instrument to improve their standard of living.

I wrote this column because I have found it increasingly frustrating to talk to individuals and families who are nervous, afraid or just plain skeptical that STABLE Accounts will cause them to lose their Medicaid, SSI, HUD or SNAP benefit. That’s just not the case for the more than 14,000 people who have STABLE Accounts today.

Lastly, I do want to talk about the few caveats that come with STABLE Accounts. Anyone opening an account will have some choices regarding where the money that is deposited will sit. In most cases, the options are tied to the stock market, which means the money you put in there can either grow or shrink with the market. There are four investment options with varying risk profiles. If that’s not your cup of tea, they also offer a low-interest savings option that secures your money against any fluctuations in the market. This is a personal decision for everyone and should be made after careful consideration.

The accounts do include a maintenance fee. If you are an Ohio resident, that fee is $30 per year ($2.50 per month). It also takes $50 to open the account, but that money is yours.

Anyone who contributes to a STABLE Account can also take an income tax deduction (up to $4,000 per year) on their state income taxes. The law even allows for carry-forward of contributions.

Learn More about STABLE Accounts

Don’t just take my word for it! I encourage anyone who has thought about STABLE Accounts to visit stableaccount.com. Check out the Frequently Asked Questions page of the STABLE Account website hosted by State Treasurer Robert Sprague. There are program booklets, flyers, PowerPoints all available under the resource section. And if you ever get the chance to hear from the professional staff from the Treasurer’s Office talk about these programs, make it your New Year’s Resolution to go and hear their presentation.

Rebecca Bates Joins DD Council Staff

Picture of Rebecca BatesThe Ohio DD Council welcomes its newest staff member, Rebecca Bates. At Council, Rebecca is a Policy Analyst and the staff person assisting the Children and Health Committee.

Rebecca has worked with people with disabilities for over 17 years in a variety of capacities in both Ohio and South Carolina. She was a Vocational Rehabilitation Counselor  for 15 years where she helped guide and support people to achieve their employment goals.  This work included working with transition youth and their families. Prior to coming to Council, she worked at the Gallipolis Developmental Center where as a Qualified Intellectual Disability Professional.

She received a bachelor’s degree from Clemson University and a master’s degree from Ohio University. Rebecca is married with two children and one grandchild, and a persnickety cat.

"I am excited about working with the Council," said Rebecca. "I look forward to helping support their work to ensure that the needs of Ohioans with developmental disabilities is at the forefront of change that improves independence, productivity and inclusion."