Parenting Impossible – The Special Needs Survival Podcast

In this episode of Parenting Impossible the Special Needs Survival Podcast, Annette begins the discussion of transition planning for young adults with special needs. Annette is well known in the state of Massachusetts for her work in this area, and as a national expert, so she puts her expertise to work in this important podcast.

Annette talks about how special needs transition planning is always a work in progress as circumstances can change as the individual gets older and it is always good to revisit your transition plan regularly.

This podcast is planned to be one in a series and starts off with a discussion of guardianship. Does your loved one need someone to make full decisions or someone to just help through the process of certain decisions? What are the other factors to consider when weighing whether to pursue guardianship or less restrictive alternatives?

The other area that Annette covers is the discussion around public benefits. Annette covers this because there are a whole host of rules and regulations in regards to any type of public benefits and the more you educate yourself in this area, the better equipped you will be to cover this part in your transition planning. Annette also explains what due process is when it comes to public benefits and why it is important for you to understand this.

Annette then covers special needs planning and all the parts that go with that including financial, wills and trusts, decision makers, power of attorney and other parts of this important planning process.

This podcast is part of a longer discussion about transition planning so stay tuned for more episodes on this very important topic.

To find out more about the process and to find Annette's checklist on transition planning, please visit: https://specialneedscompanies.com/

This week, Annette has a touching interview with Lisa Deck of Rare New England, an organization that assists patients, families and others that have been touched by some form of rare disease. The organization provides resources and other educational opportunities to the rare disease community.

Lisa is a fighter, having experienced multiple strokes as well as two brain surgeries. She's an inspiration and now blogs and speaks about her personal experiences. She is an expert at taking her adversity and turning that into advocacy on behalf of others who have had challenging circumstances in their lives.

Lisa begins her story of advocacy at the age of 21, right before her college graduation, when she started to feel symptoms such as numbness, headache and finally ended up in the emergency room, suffering from a stroke. Shocked and frightened - hard to believe someone her age could have a stroke and then six months later, she suffers another stroke.

Her story is tearful, joyful and riveting!

Lisa wants everyone to understand that a stroke can happen to anyone at any age and she has made it her life's mission to educate the public and others as well as advocate for those suffering from a stroke.

Lisa has a very powerful story she shares with Annette including how to advocate and care for yourself, and the power of community. Tune in for more.

You can find out more about Lisa on her website: http://lisadeck.com/

And learn more about Rare New England here: http://www.rarenewengland.org/

Annette takes time on this podcast to sit down with Regina Snowden and Joanna Dumas of Partners For Youth with Disabilities based in Massachusetts.

This amazing organization runs several programs including one to one mentoring, career readiness, online mentoring, theater arts and a youth leadership forum, all for youth and young adults with disabilities.

Regina and Joanna discuss the importance of mentorships and how powerful a mentorship relationship can be and why it is so beneficial to youth with disabilities. They also discuss how they got to this point with the mentoring program currently in place in Massachusetts.

Annette brings up the fact that there is a shortage of mentors in this county and why it is so important for young adults with disabilities to have some type of mentor in their transition years. They also discuss the National Disability Mentoring Coalition https://ndmc.pyd.org/ where you can find out more about mentoring an individual with a disability.

Regina and Joanna point out that there is no cost for a person with a disability to find a mentor with the program, but they do rely on the generosity of donors to continue their fine work.

And they discuss how people can get more involved in the organization and mentoring.

This is a very important topic in the disability community and an effective way to assist those transitioning to adulthood.

Find out more about this great organization at: https://www.pyd.org/

"This week Annette discusses an important issue facing Social Security recipients. The current administration is proposing a change to the way recipients are being reviewed to continue receiving their benefits.

She also answers a series of questions sent in by listeners. First a question about how working impacts Social Security benefits. Next she tackles how to start thinking about housing issues for an adult child and what are the first steps to take. And lastly she answers questions from siblings who are thinking about when they will become a guardian for their brother or sister and how they can begin to get ready for that responsibility.

Listen in for all of these and if you have questions you'd like answered send them to Annette at www.specialneedscompanies.com or @AnnetteHines15.

This week, Annette sits down to discuss the 2020 census and why it is so important for individuals with disabilities. Her guests are Carly Bari, partnership specialist with New York Regional Census Center and Ellen Taverna, policy officer with The Arc of Massachusetts.

Annette starts by asking her guests for an explanation of the census and its function. Carly explains that the census takes place every 10 years and helps the US government determine our representation as well as our funding for programs such as roads and bridges all the way to social service programs that many rely on.

Did you know that according to the CDC people with disabilities make up 26% of the population? Even still, the disability community has been designated as a population that may be undercounted because many may not respond to census inquiries by mail. It's important for those with disabilities to be counted so proper funding can be secured for much-needed programs both at the federal and state level. Those can include housing, health benefits and other forms of support.

As Ellen and Carly point out, people with disabilities can sometimes be hard to count because they can live in "Group Quarters" and may also be part of other hard to count populations such as those that do not speak English, homeless populations and others.

They discuss key concerns with Annette over who should answer the questions on the survey when folks when need assistance, what to do when someone has a guardian and difficult topics such as students in residential schools and institutional living. Everyone should be counted only once!

The link to the census webinar hosted by the Arc of Massachusetts can be found below.

https://youtu.be/IEW1xpOdT30

More on the 2020 census can be found here. https://2020census.gov/

Use The Arc's and the Census resources:

• https://thearcofmass.org/census
• https://thearc.org/census/

Ellen Taverna

Email: [email protected]

Phone: 781-891-6270 ext112

Carly Bari

Email: [email protected]

Phone: 401-523-8961

Special needs planning takes front and center on the Special Needs Survival Podcast this week. Annette talks about what any family or caretaker needs to understand going into the year 2020 when it comes to planning for the future.

Annette quickly goes over the SECURE Act which was just signed into law. The SECURE Act provides some flexibility and opportunities when it comes to tax planning and distributions when using special needs trusts. If you have a special needs trust or you should have a special needs trust, Annette says it's a must that you sit down with your attorney to review your plan.

Then, Annette discusses why this is a good time to review all the individuals who have roles to play in your special needs plan. Look at your list of selections for guardians, those with power of attorney, trustees and those involved in any health care proxy. Annette says particular attention needs to be placed on guardians. She also suggests perhaps using a trust protector and she explains what that is in the podcast episode.

Annette also strongly suggests creating a Letter of Intent in your special needs planning. She talks about what this is and why it is vitally important. It details all the wishes you have for your special needs loved one from guardians and family roles all the way down to what doctors and other professionals you want to be in your loved one's life. And small details as well that might turn out to be major factors in someone's life.

Annette wraps up by going through a few other times including reviewing assets, a move across state lines and so much more.

If you have done special needs planning or you need to do so, you'll need to listen to this podcast.

Mini-podcast episode.

Annette takes a few minutes to talk about the recent developments in Massachusetts with Nicky's Law. Nicky's Law passed the Massachusetts House of Representatives in January 2020 and paves the ways for an abuse registry for those who mistreat individuals with disabilities. The governor of Massachusetts is expected to sign the bill which will make this important effort law in Massachusetts.

Annette sat down with Cheryl Ryan Chan on Episode two of parenting Impossible and the two talked about the critical need for such a registry. Nicky's Law is named after Cheryl's son who suffered abuse at the hands of a caretaker. You can listen to that episode here: https://specialneedscompanies.com/nickys-law/

Annette also talks about the efforts of Blaine Brockman who she interviewed in Episode 18. Blaine has dedicated his life to creating safe communities for those with disabilities. You can revisit that episode here. https://specialneedscompanies.com/ep-18-safety-and-community-integration-for-people-with-special-needs/

Annette talks about the need for more states to have this type of protection and encourages all to check to see if there is a comparable law in their states. If not, it's time to start advocating for our loved ones and get active.

Annette sits down with Amber Bobnar, who runs the very popular WonderBaby website. WonderBaby is a website that is packed full of valuable resources for parents raising children that have visual impairments and other disabilities.

Topics on her website range from tips on raising children that have visual impairments, toy reviews and recommendations for children with disabilities, sleep, eating and nutrition advice as well as assistive technology, and parent advice on how to have a constructive IEP meeting with your school system. And much more! Articles are written by Amber as well as a whole host of other informational pieces by contributors across the globe.

Articles are translated into several languages including Arabic, Spanish and Dutch.

Annette and Amber start by discussing how special needs parents need to be, and end up being experts in so many areas. If your child has multiple disabilities, you end up having to educate yourself in other areas to adequately advocate for your special needs loved one. Amber started WonderBaby in 2006 after belonging to many chat groups and other outlets to gain and share information about her son Ivan and his disabilities. She felt that there needed to be a place where parents could find this information easily.

Amber talks to Annette about the important topic of self-care and offers some advice to special needs parents and caregivers. First, she says you need to learn to say no. The word no is very powerful and can save you from entering into commitments that can take you away from your responsibilities and save you from exhaustion. Second, she says to have something that you enjoy for yourself and she reveals what she does to have fun in this podcast.

And she also finds a way to say yes to certain things in her life such as a good friend asking her out to lunch. She feels that incredibly important for your mental wellbeing.

Her final piece of advice? Take a nap every once in a while!

Find out more about the incredible resources at WonderBaby below:

http://www.wonderbaby.org/sites/wonderbaby2.perkinsdev1.org/files/wonderbaby-flyer.pdf

https://www.facebook.com/wonderbaby.org

The SECURE Act went into effect on January 1, 2020 and Mark Worthington of Special Needs Law Group joins Annette to discuss this important development and to shed some light for special needs parents about what they need to pay attention to when it comes to retirement and leaving assets to their loved ones with special need.

One of the big changes in the SECURE Act is that it increases the retirement age from 70 ½ to 72 years old for traditional IRA required distributions. But the Act also ends what some call Stretch IRAs. Now, all distributions must be taken no later than 10 years after the plan owner's death.

Most importantly there are significant changes that anyone with a special needs trust must be aware of and that's what Mark and Annette discuss today. One of those changes allows for certain special needs trusts to use what was called the Stretch… the life expectancy of the deceased. However, as Mark points out in this podcast, there are still restrictions and he goes over those limitations.

Mark and Annette discuss what needs to happen next if you do have a special needs trust in place to make sure the language is updated. It is important for anyone to contact their attorney to make sure that the language reflects what is now in the SECURE Act.

You can also find out more in this recent blog post by Mark and Annette at the Special Needs Law Group of Massachusetts, PC.

https://specialneeds-law.com/the-secure-act-and-special-needs-trusts/

On this episode of Parenting Impossible, the Special Needs Survival Podcast, Annette takes time to address a number of issues and challenges that could face the special needs community in 2020. Her guests are MacKenzie Mahoney, the newest attorney with Special Needs Law Group and Mark Worthington, a partner at the firm.

Annette and MacKenzie discuss the growing concern regarding the availability of direct support professionals that assist individuals with disabilities. In many states, there continues to be a lack of qualified professionals that support people with disabilities including in-home services as well as those that are employed by various agencies that serve those with disabilities.

Annette also brings up another issue facing the disability community which is aging parent caretakers. As people with disabilities get older, so do their parents and other supports. The two discuss what systems need to be in place to secure a bright and independent future for those who need various levels of care as they get older.

The discussion turns to federal funding for disability programs and the various ways in which those funds can support people with disabilities. There continues to be growing pressure on federally-funded programs such as Medicaid and other critical programs and Annette and MacKenzie discuss what they see for the year 2020.

And a discussion that doesn't seem to go away are the continued biases that seem to always be present regarding individuals with disabilities. These biases and old ways of thinking continue to affect the ability to have people with disabilities become part of the workforce and gain meaningful employment. And, biases also impede the ability for people to become part of a community and secure proper housing withing a community.

Mark Worthington joins Annette for the last segment of the podcast to discuss more on the outlook for 2020 including the passage of the SECURE Act in Congress and what that means for the disability community.

Wishing you all a Happy and Healthy New Year!