Parenting Impossible – The Special Needs Survival Podcast

After six years of proposals, feedback and edits, the Internal Revenue Service (IRS) finalized the Achieving A Better Life Experience (ABLE) Accounts regulations on Oct. 1, 2020. While some of the regulations were expected or familiar, others were a bit of a surprise. In this episode of Parenting Impossible, Host Annette Hines talks with her favorite podcast guest, her husband Mark Worthington, about this finalized document and the implications it could have for people with disabilities and their families across the country.

ABLE Accounts were created to help people with disabilities and their families save and pay for disability-related expenses. These regulations may not be perfect, but they are a great tool that could help your family.

Five of the main points that Annette and Mark address include:

1. The designation of authorized signers and authorized successor signers of the ABLE Account is selected by an eligible individual or determined by a hierarchical list of candidates for a person who lacks the capacity to designate someone.
2. For an ABLE Account, you can have marked and severe functional limitations but still be involved in a Substantial Gainful Activity (SGA).
3. You can put an additional $15,000 in the account from outside sources, but any other funds added to the account (up to about $12,000) must be from the eligible individual.
4. Individuals are responsible for tracking expenses to correctly pay their taxes, but they no longer have to report these expenses to the account. In addition to this regulation, the owner of the account, an eligible individual, can treat qualified disability expenses paid up to and including the 60th day of the new tax year as being paid in the previous tax year.
5. Eligible individuals can name a death beneficiary, and if none is named, it goes to the designated beneficiaries or the eligible individual's probate estate. Upon the death of the individual, the IRS allows you to pay qualified disability expenses even if it is not for a pre-death contract, meaning you can pay for the funeral after death and before Medicaid payback.

The final regulations are not on the Federal Registry yet, but you can read the full document by visiting the IRS's website here.

Mark is also an experienced special needs lawyer, a Professor of Law, and a Director of the Graduate Program in Elder Law and Estate Planning at Western New England University School of Law.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

In this episode of our Parenting Impossible podcast, Annette interviews "warrior woman," Nina Bakoyiannis, to discuss the interwoven framework of disability discrimination in our society that exists both interpersonally and institutionally.

Under her pen name "Despina Bakos," Nina created a blog where she talks more generally about her experiences growing up with a physical disability and the issue of ableism in our society. She also works with a grassroots disability rights organization in New York called ADAPT that is currently working on Medicaid reform and advocates for funding and community understanding of home care services. In her professional life, she is currently studying to be a clinical psychologist, completing her third year of a Ph.D. program where she studies the intersection of ableism and mental health.

Nina describes ableism as the discrimination towards disabled people that manifests in a wide array of damaging behaviors. One such behavior is believing that the lives of disabled people are more disposable than others. Another ableist behavior is assuming that able-bodiedness is the standard. This mindset creates lower expectations for disabled people regarding relationships, employment, quality of life and more.

Unfortunately, the majority of lawmakers operate under these assumptions, leaving the disabled community unrepresented and unprotected. For example, many people are disqualified from benefits, SSI, and Medicaid when they get married because their partner's assets get added into the equation, increasing their household income above the maximum limit that these programs will cover. This discrepancy leaves individuals with disabilities without the financial support they need.

Nina and Annette also dive into the discussion of Institutional Bias. People with disabilities and those who are dependent on home and community care should be able to stay in the community and not be forced to live in an institution. Advocates are fighting to prevent members of the disabled community from being mandated to live in institutions when that is all that Medicaid will pay for.

Listen to the full conversation in the podcast below. You can also find Nina's website here and follow her on Twitter and Instagram.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

The death of Associate Justice of the Supreme Court, Ruth Bader Ginsburg, has brought a new push for disability rights. In this episode of Parenting Impossible, Host Annette Hines talks to Alison Barkoff, Director of Advocacy at the Center for Public Representation in Washington D.C. They discuss the impact of Justice Ginsburg's death on the disability community's fight for civil rights and why litigation to combat institutional bias is essential for the wellbeing of people with disabilities.

Alison came to this profession based on personal experience and connection to the disability community through her brother Evan who has Down Syndrome. Her family made the courageous decision to care for him themselves rather than sending him to an institution nearly 40 years ago. This choice made Alison realize the lack of support for families like hers.

Justice Ginsburg wrote the groundbreaking decision for the case, Olmstead v. L.C., in 1999 that said the segregation and discrimination of people with disabilities was a violation of title II of the Americans with Disabilities Act. According to Alison, this case is the centerpiece of the disability community's civil rights movement. It gave people with special needs the civil right to participate and be included in their community for the first time.

Ever since the 1980s, American society has greatly enforced antiquated institutional services. New lawsuits are in progress across the country, fighting for individual rights and care instead of group-enforced institutional living. These cases have expanded the ruling of the Olmstead v. L.C. decision by challenging educational and care homes that are privately funded but run like traditional institutions. This fight is not trying to simply change where people with special needs live but also how they live.

Alison's work within policy and as a litigator has allowed her to be a part of the fight in several of these new lawsuits, one ten years ago in Georgia and another recently in Texas. These lawsuits work to show how people with disabilities are far more capable of making their own decisions and having a say in their care than people previously believed.

The push for disability rights is also about reforming healthcare and Medicaid, for Medicaid may provide support for families with children who have special needs. It was initially created for a society based on institutionalized ideals, and private insurance does not typically cover the support or services that these families need. This discrepancy leaves the question to families of whether or not to risk choosing an institutionalized service or take on the burden of care alone for the foreseeable future.

In 2014, the Home and Community Based Services Settings Rule was implemented, and states are still working to make the required changes. While this may be frustrating for families who desperately need home and community services for support, this rule is groundbreaking and will ultimately lead to individualized care across the nation.

Each state has an advocacy and disability rights center. You can find the contact information for the Center for Public Representation in Washington D.C. through their website, and you can connect with them on Facebook and Twitter. You can also contact Alison by emailing her at [email protected].

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

In this episode of Parenting Impossible, Host Annette Hines talks about bringing behavioral analysis training home with her guest, Jessica Guzman. Jessica previously worked as a Board Certified Behavior Analyst, or BCBA, in Austin, Texas, to help families navigate challenging behavior for their young children with special needs. She also has a master's in education. Recently, she created her own company, "Little Wildlings Ltd. Co. " where she is a behavior consultant who helps kids from 18 months to 6 years old with behavioral issues.

Annette and Jessica first connected on LinkedIn when Annette saw a message Jessica had posted from a clinician that read:

"When you hire a clinician for your child, try to find one who understands that their job is ultimately to eliminate the need for the very same job you hired them for."

Jessica's message affirmed Annette's experience in clinics with her daughter, Elizabeth, which had shown her the need for clinicians to have this philosophy. Jessica's success as a BCBA has also shown the benefits of having this mindset—Jessica's goal is to teach her clients (family members, caregivers and the special needs child) the tactics and techniques that are appropriate and practical for their individual needs so that they can implement these changes on their own.

In this special episode of Parenting Impossible, Host Annette Hines welcomes back some of her early podcast guests, Hillary Dunn Stanisz, Cheryl Ryan Chan, and Dave Greenwood, to celebrate the podcast's first anniversary and open the door to the future of conversations about special needs. This episode is also significant because Annette lights a candle for her daughter, Elizabeth, in honor of Mitochondrial Disease Awareness Week.

Annette launched Parenting Impossible - The Special Needs Survival Podcast out of the desire to connect with the special needs community and create a one-stop-shop for conversations, information, and resources that she could not find when her children were small and she needed it most. To further her goal of helping the special needs community, Annette also founded Special Needs Companies. Not everyone has access to an attorney, some people gather information in different ways, and others are not sure what they are looking for. Regardless, this podcast provides an opportunity to hear advice and stories from experts while you relax and enjoy your coffee.

Cheryl, featured as a guest on Episode 2 and 29 of Parenting Impossible, is a professional facilitator, focused on person-centered planning for people with special needs and their families and caregivers. She is also a mom to her 27-year-old son, Nicky, who is severely impacted by autism. For Cheryl, this podcast encourages resiliency and sustainability, and people are drawn to it because Annette brings her expertise and heart to every episode.

Hillary, a lawyer at the Disability Law Center in Boston, joined the podcast previously in Episodes 3 and 4. Her brother, Chris, is now 42 years old and has Angelman Syndrome. He may be nonverbal, but his killer smile and big heart influenced Hillary's career path and every part of her life. She is grateful for this podcast because it is the only place that addresses the roles of siblings in the special needs community.

Dave produced many episodes of Parenting Impossible, taught Annette how to use a microphone, and was previously featured in Episode 14. He helps busy professionals create content, including podcasts. He is the author of the book, Overcoming Distractions: Thriving with Adult Attention Deficit Disorder, and speaks about the positive aspects of ADHD in his book and his podcast. Dave says that people in the special needs community are tired and confused, but Parenting Impossible is a place for them to get relevant information that will help them in their everyday lives.

For future podcasts, Cheryl and Hillary suggest discussing community and federal laws concerning the special needs community, abuse and neglect from caregivers, stories from families, and sharing resources that are hidden gems.

Dream podcast guests for the future include actor John C. McGinley, who is an advocate for people with down syndrome; Tim Shriver, a film producer and disability rights activist; national media correspondents; and other guests with disabilities.

Annette and Parenting Impossible have come a long way from her early episodes, when, for example, she had a case of nerves and mispronounced her own name! Over the past year, the podcast has featured experts from a wide variety of fields, shared invaluable resources, and featured families in the special needs community. In every episode, you'll find genuine conversations designed to help you face any challenge you'll encounter in the world of special needs. Stay tuned for an exciting new chapter of Parenting Impossible!

In this episode of Parenting Impossible, host Annette Hines talks to sleep consultant Melissa Doman. For more than ten years, Melissa has worked with special needs families who are fed up with sleepless nights and are ready to find solutions despite being told there's nothing that can be done about their child's sleep problems. Annette and Melissa begin their discussion with an explanation of "sleep training" and how it can benefit special needs children in particular. Melissa breaks down the importance of using techniques — other than medication — to build new sleep routines and habits. They also touch on the added difficulties that come with seizures and the connection they have to sleep. Melissa combines the Doman Method with the Sleep Sense Program created by Dana Obleman to help kids with special needs develop independence within their bedtime routine, no matter their diagnosis or age. This process of neuro-rehabilitation usually takes about three weeks, but in the end, both the child and their family members or caregivers will have improved the quality of their sleep. With the onset of COVID-19, anxiety has increased for a number of families and their special needs children, and sleep has become an issue for kids who previously slept well. Melissa addresses certain fears that these children face and uses checklists to ensure consistency that can help ease their stress. Melissa's top three tips for families with special needs children who struggle to sleep are: Don't skimp out on bedtime — earlier is always better than later. Have a consistent bedtime routine that incorporates whatever physical or tactile needs your child has. Encourage independence as much as possible, and sleep quality will improve. Annette's advice? Don't be afraid to ask for help if you need it. You don't have to suffer alone night after night. Melissa lives in Philadelphia, Pennsylvania, but she provides services and information for families across the country virtually and in her blog. Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

In this episode of Parenting Impossible, host Annette Hines discusses meaningful communication with guest Randi Sargent. Randi created the website SayitwithSymbols.com, the only source dedicated to taking the guesswork out of caring for adults with cognitive/communication challenges by using easy-to-use, picture-based communication aids designed specifically for adult caregiving.

Randi was inspired to start SayitwithSymbols.com after the birth of her son who was born with severe communication and intellectual disabilities. Despite years of specialized programs, Randi's son never developed the ability to speak, read, write or walk independently.

Today, she has created products that have been uniquely designed to be functional for adults based on best practices supported by academic research. Randi's products have been field tested and improved by caregivers trying to communicate with their loved ones who cannot speak.

Host Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.