On July 2, 2019 the Department of Housing and Urban Development (HUD) announced that they would be releasing 150 million dollars in funding to help non-elderly individuals with disabilities (aged 18-62) acquire housing in the community.

This funding opportunity falls under the Mainstream Housing Choice Voucher Program. According to the press release, HUD expects to award 300 grants, ranging from 20,000 to 3 million. They anticipate that these grants will help approximately 18,000 individuals with disabilities.

Please be advised that this funding opportunity is not for individuals or families, rather public housing agencies that wish to apply for funding to administer mainstream housing vouchers.

What is the Mainstream Housing Choice Voucher Program?

The Mainstream Housing Choice Voucher Program “enables families having a person with disabilities to lease affordable private housing of their choice. Mainstream program vouchers also assist persons with disabilities who often face difficulties in locating suitable and accessible housing on the private market.” In order to qualify, families must meet income eligibility criteria, as well as have a non-elderly family member that has a disability. They are then added to a housing choice voucher list to wait until the public housing authority selects them for a voucher.

It is important to note that the only differences between the mainstream housing choice vouchers and the regular tenant-based voucher program lies in the fact that the mainstream housing voucher serves a special population. All other rules for administering the mainstream vouchers are the same.

For more information, a Mainstream Housing Voucher FAQ can be found here, or you can visit  HUD’s website.

How can my organization apply for this funding?

All applications for this funding are due September 5, 2019. For detailed information on applying for this funding, please see the Notice of Funding Availability (NOFA). This document provides an outline of the funding opportunity, including the description, award information, eligibility, application, submission, and review information, as well as agency contacts. All applicants are cautioned that HUD funding is extremely competitive, so attention should be paid to ensuring that the applications are complete and eligible.

Interesting note: The NOFA does state that while not a necessity to receive funding, applications from public housing agencies will have more weight if they have:

1. targeted funds to assist non elderly persons with disabilities that are transitioning out of a segregated setting or at risk of being institutionalized, have been, are currently or potentially could be homeless, or are currently a client in supported housing or rapid rehousing project and/or
   
   
2. plan to formalize partnerships with and use resources from “state Medicaid agencies and various health and human services partner agencies or organizations including community-based disability organizations.”

Learn more about Integrated Living Opportunities and Independent Living for Adults with Disabilities

Integrated Living Opportunities (ILO) is a non-profit organization that is devoted to helping families with special needs build supportive, integrated communities that enable safe, productive, independent living options for their young adults with developmental disabilities. ILO helps families create inclusive communities to facilitate networks of support for adults with disabilities to enable them to live independently.  ILO does this by developing teams of paid and unpaid individuals for our self-advocates as they move out of their family houses into their own homes.

The idea for ILO grew from a need expressed by individuals with disabilities and their families in Washington, D.C., Maryland and Virginia. This need was for independent living options that were inclusive, sustainable, affordable, and community based. Carney, along with a group of core participating families, founded ILO to fill that need.

Since then, our organization has grown rapidly – ILO now supports 28 families in Montgomery County Maryland, Washington DC and Northern Virginia.  Of the 28 families, 17 family members with disabilities (self-advocates) are now living independently with the supports to be successful and live a full life.  ILO facilitates five communities throughout Montgomery County Maryland, Washington DC and Northern Virginia. For families that are not ready to join ILO, ILO also runs ILO Community Group where there are over 65 family members.

If you would like to learn more about how ILO can help your family member with disabilities obtain independent, supported community based housing, please check out our website www.ilonow.org, or contact us.

Last year (2018), Integrated Living Opportunities (ILO) took part in the nation-wide Bike to the Beach (B2B) for the first time. Three ILO riders, Maedi Tanham Carney, Rip Collins and Gerry Dorros each biked an incredible 100 miles, raising over $10,000! ILO volunteers worked very hard fundraising, spreading the word, and manning a rest stop on event day – all ensuring that this event was a success.

This year, on August 2, ILO will be participating in B2B for the second time. We have expanded our riding team to five members, and will once again be hard at work promoting B2B and ILO. We will also be manning a rest stop again, and we need your help!

What is Bike to the Beach?

Bike to the Beach (B2B) is an annual event in which a community made up of individuals, cyclists, local organizations, advocates, philanthropists, corporate companies and national partners all come together to promote cycling, raise funds, and support individuals with autism and developmental disabilities.

B2B began a number of years ago when two friends biked 100+ miles to attend their high school graduation – the route took them from Washington, DC to the Delaware Shore. This tradition between friends grew year after year, until it developed into a philanthropic organization dedicated to making a positive impact on the lives of individuals with autism and disabilities. Since its creation, B2B has raised more than 3 million dollars, biked more than 400,000 miles, and has been hosted in 7 cities.

For more information on Bike to the Beach, please visit their website.

How Can You Help?

There are a number of ways in which you can help support ILO at this event – Fundraise and/or ride, volunteer at the event, or help us to promote B2B and ILO’s participation in the event.

Fundraise/Ride: The main event is a 100-mile bike ride from DC to Dewey Beach, Maryland. There are also options for riders to complete 25- and 50-mile options. At the end, participants can either take the B2B bus back to DC from Dewey Beach (or, stay and spend the weekend celebrating!) Riders are fully supported by B2B, and are provided with fundraising tools, a personal website, and rewards to meeting goals. Each rider must commit to raising $500.  If you are considering riding, please contact Maedi, maedi@ilonow.org.

Volunteer at the event: As a Gold Partner, ILO must commit to staffing a rest stop. All supplies and equipment are provided, and it involves showing up early (5:30am) on race day. ILO needs at last 5 volunteers for the rest stop, so please consider helping out – interested individuals can contact Debbie Fickenscher, Debbie.fickenscher@verizon.net.

Help us Promote: A large part of B2B’s mission is growing the community of disability advocates. So, help us spread the word about B2B & ILO – sharing this blog or our posts on social media, help distribute flyers and posters (provided by B2B), and help connect with other partner organizations are all valuable ways to help us get the message out there! If you are interested in supporting ILO through our marketing efforts, please contact Jan (janislynnbrown@verizon.net).

Sponsor an ILO Team Member

Another valuable way that you can support ILO is to donate and help our riders meet their personal fundraising goals. This year, ILO has five members participating in B2B. Please consider donating to these riders to help them meet their personal goals as they raise money for self-advocates in the Washington, DC, Maryland and Northern Virginia areas.

Gerry Dorros (Team Captain): Donate to Gerry

Maedi Tanham Carney (Founder of ILO): Donate to Maedi

Murdoch MacNeil: Donate to Murdoch

Vijay D/Souza: Donate to Vijay

Tom Boeke: Donate to Tom

More information

Bike to the Beach is the premier autism and developmental disability cycling event in the Washington, DC Area. We are here to help you achieve your goals, surpass your personal challenges, to raise funds for our cause. From Century ride veterans to first time fitness challenge riders, all of our riders will enjoy the sunset and sandy beaches in Dewey Beach, DE. If you would like more information, contact ILO (info@ilonow.org).

Thanks so much for your support – we look forward to seeing you on August 2!

On their own, but not alone: How a group of men with autism found an independence their families weren’t sure they would ever have
Theresa Vargas, The Washington Post

Ben Kabaker can cook eggs.

His mother, Andrea Kline, knows that doesn’t seem like much. But her 33-year-old son is on the autism spectrum and, when he lived with her, she tried several times, without success, to teach him how to crack an egg.

Only after he moved into his own apartment did he finally, with the help of a life coach, learn how to do it.

“Ben can crack eggs,” Kline says, smiling at the simplicity and the grandness of that statement. “To me, that’s important because it is another step forward, it’s something Ben can do without me.”

It also offers her a basic reassurance: If he can cook an egg, he can eat. He can survive.

For many parents of children with developmental and intellectual disabilities, a constant concern, one that hovers over short-term worries and nags even when everything is going well, is this: What will happen when I’m gone? Who will take care of my child then?

Some Washington-area families say they have found an answer that gives them comfort and that they hope may serve as a model for others.

To see it, I spent a recent afternoon inside a Gaithersburg apartment building called the Crossings.

There, seven men with autism and other developmental disabilities, live in their own apartments. The building is not a group home. It is a five-story complex with a fitness center and a swimming pool that advertises itself to the general public as “a brand new affordable apartment community featuring 1, 2 and 3 bedroom apartment homes.”

But the men’s families, through an organization called Integrated Living Opportunities, have created a unique and intentional community for them. They have given them a way to live on their own and yet never feel alone. The seven men get together for activities, such as movie nights and workout sessions. They have a life coach and a “community builder,” which is a staff person who checks on each of them daily and brings them all together weekly.

On the afternoon Kline spoke to me about her son, another resident, Andrew White, sat with us.

“Speaking of eggs,” he said.

His mom, Donna White, sat next to him and gently asked, “Is this going to be relevant to what we’re talking about?”

“No,” the 26-year-old said.

White was one of the first of the seven men to move into the building in November 2016. I asked him what he thought when he first saw his one-bedroom apartment. Without hesitation, he said, “I thought I was going to have the most plush apartment in Maryland.”

His mom recalled that, on the day he moved in, she and her husband went to Ikea to buy furniture. By the time they returned two hours later, he had put up his Christmas tree and decorated it with ornaments.

Now, his apartment is adorned with characters from the cartoon “SpongeBob SquarePants.” Pictures of them cover walls in every room, from the kitchen, where his signature dish has become “steak and mashed potatoes,” to the bedroom, where he keeps an impressive collection of Funko figures and a diploma showing he received an associate degree from Montgomery College.After moving in, White said he had to figure out how to do more things by himself. He learned to order groceries through a delivery app. He also stopped relying on his mom to drive him to his job at the Food and Drug Administration, where he is a clerk. He now takes a bus to a Metro station, where he catches a shuttle.

“Day-to-day, he can handle his own life and pay his own bills,” his mom said.

“As a matter of fact, I pay them as soon as I get them,” he said.

Maedi Tanham Carney calls what is occurring at the Crossings “a complete success story.” She and five families founded Integrated Living Opportunities in 2014, after receiving guidance from the Center for Independent Futures in Evanston, Ill. None of the founders knew each other before coming together, but they all lived in the Washington region, had children with developmental and intellectual disabilities and were looking for ways to help them live independently.

“Moving into four walls does not make you independent,” said Debbie Fickenscher, whose family was among the founders. Her daughter has Down syndrome and lives with a roommate in Germantown. “You need skills. You also need a community.”

Carney said the nonprofit counts among its members 28 families and has helped create “pods of communities” in the District, Virginia and several places in Maryland. In Bethesda, two people live next door to each other. In the District, because affordable housing is harder to find, several people live in different parts of the city but share a “community builder” who checks on them and makes sure they connect with one another.

The situation at the Crossings is the most ideal, Carney said, because the men share a building and can walk to the pharmacy or the park together, which they do. On a recent night as they worked out in the fitness center, one man talked about an upcoming job interview he had and another about how the buses seem to be getting more dangerous.

Part of what also makes the community work is that the residents aren’t building it alone. Their relatives also gather for regular meetings. Carney recalled one that occurred shortly after Ben Kabaker, who works remotely as a medical coder, moved into his apartment. At that meeting, Carney said Kabaker’s father came up to her.

“He said, ‘I never thought the day would come when Ben would be living on his own,’ ” she said.

Donna White recalled another gathering when she confessed something that she knew those in the room would understand in a way that others might not. It had been a particularly trying time for her because of a series of family illnesses and injuries. Without even realizing it, she had allowed three days to go by without checking on her son.

“I had so much going on. I kind of forgot he existed,” she recalled saying.

She realizes that sounds bad. But what it signified, and what she had no doubt the other families would get, was that she knew Andrew would be okay.

“Speaking of being okay,” he said.

Our goal at M&L Special Needs Planning, LLC is to help individuals with disabilities lead full, productive and happy lives.

We believe that employment is an important part of a full life. It aids independence and integration, and studies have shown that meaningful, rewarding employment is psychologically beneficial. Employment provides opportunities to improve self-confidence, and offers a sense of purpose and self-worth. It can help individuals learn new skills and continue to build on existing skills. It plays a role in socialization, by facilitating engagement with peers. In addition to these benefits, it may also be financially necessary for individuals that live independently. Despite the positive outcomes associated with employment, however, many individuals with disabilities face insurmountable barriers when it comes to finding a job.

This blog discusses the Workplace Innovation and Opportunity Act (WIOA), an important piece of legislation that attempts to remove these employment barriers. Although this legislation is 5 years old, there has been renewed debate on its effectiveness and clarity, specifically in regards to adults with disabilities.

What is the Workplace Innovation and Opportunity Act?

The Workplace Innovation and Opportunity Act (WIOA) was signed into law in 2014 by President Obama, replacing the Workforce Investment Act of 1998 (WIA) as the main national legislation on workforce development. This new version of the law includes a number of improvements on WIA. For example, it provides an increased focus on youth with disabilities. It offers more flexibility in the use of funding under the legislation’s guidelines. It also puts in place accountability criteria for core programs under the bill, and improves on the training services that are offered. In short, (according to this Huffpost Article), “[WIOA] streamlines and modernizes the maze that was federal job-training programs so that workers can access the right training, immediately.”

There are a few important aspects of this Act that individuals with disabilities and their families should pay attention to. According to an article published on disabilityscoop.com in 2014: “Under the new law, individuals with disabilities aged 2 and younger will no longer be allowed to work for less that [minimum wage] unless they first receive pre-employment transition services at school and try vocational rehabilitation. The measure also mandates that state vocational rehabilitation agencies work with schools to provide transition services to all students with disabilities and requires that the agencies allocate at least 15 percent of their federal funding towards transition efforts.”

If you are interested in learning more about why WIAO is relevant to your family member with disabilities, check out this PACER article that breaks it all down.

Recent Criticisms of WIOA

Recently, legislators have been asking the Department of Education to have another look at WIOA, stating that there is “ongoing problems with the implementation of some aspects of the law,” particularly the aspects that address employment for individuals with disabilities in competitive, integrated settings. In a letter to Secretary of Education, 8 Republican members of congress asked for clarification about the implementation of the law. They claimed that the “imprecise criteria” designated to define integrated settings resulted in many vocational rehabilitation agencies to issue a “blanket denial” approach in regards to many employment settings, specifically AbilityOne (the largest source of employment for individuals with significant disabilities or are blind).

The letter ends by asking for the Department of Education “rescind the current guidance and instead promulgate new rules by which state VR agencies will conduct case by case determinations for each AbilityOne and State Use job that may be considered competitive employment under WIOA.”

Follow this link to read the letter in full.

Would you Like to learn more?

If you would like to learn more about the WIOA, or any legislation that affects individuals with disabilities and their families, please contact us. We are experienced and knowledgeable financial planners that specialize in helping families deal with the unique challenges of the special needs journey. For more information on exactly how we help, check out our services page or browse through our blog archive.  

FOR IMMEDIATE RELEASE M&L Special Needs Planning, LLC Receives 2019 Best of Washington DC Award

Washington DC Award Program Honors the Achievement

WASHINGTON DC April 15, 2019 — M&L Special Needs Planning, LLC has been selected for the 2019 Best of Washington DC Award in the Financial Planner for Special Needs category by the Washington DC Award Program.

Each year, the Washington DC Award Program identifies companies that we believe have achieved exceptional marketing success in their local community and business category. These are local companies that enhance the positive image of small business through service to their customers and our community. These exceptional companies help make the Washington DC area a great place to live, work and play.

Various sources of information were gathered and analyzed to choose the winners in each category. The 2019 Washington DC Award Program focuses on quality, not quantity. Winners are determined based on the information gathered both internally by the Washington DC Award Program and data provided by third parties.

About Washington DC Award Program

The Washington DC Award Program is an annual awards program honoring the achievements and accomplishments of local businesses throughout the Washington DC area. Recognition is given to those companies that have shown the ability to use their best practices and implemented programs to generate competitive advantages and long-term value.

The Washington DC Award Program was established to recognize the best of local businesses in our community. Our organization works exclusively with local business owners, trade groups, professional associations and other business advertising and marketing groups. Our mission is to recognize the small business community’s contributions to the U.S. economy.

SOURCE: Washington DC Award Program

CONTACT:
Washington DC Award Program
Email: PublicRelations@awardedcity.org
URL: http://www.awardedcity.org

###

###

Integrated Living Opportunities (ILO) is an organization dedicated to helping people with disabilities build inclusive and supported communities in which they can live independently. ILO does this by providing families with the tools and resources needed to create communities, as well as developing teams of paid and unpaid individuals for our self-advocates as they move into their own homes.

On March 22, Center for Medicare and Medicaid Services (CMS) released some new guidance that will open up even more independent living possibilities for adults with disabilities.  Among other things, it removes language that has impeded an individual with disability’s ability to choose the type of setting in which he or she would like to live. This new guidance is an important victory for individuals with disabilities and advocates from across the country. It has long been argued that the previous guidance was discriminatory, and advocates have worked hard to regain the individual’s ability to choose their preferred residential setting.

What does this new guidance mean?

If you are unfamiliar with this issue, here is a brief summary: The CMS Guidance affects the types of residential settings that individuals with disabilities can live in and still receive their Home and Community Based Services (HCBS) waiver. These waivers provide opportunities for Medicaid beneficiaries to receive services in their own home or community rather than institutions or other isolated settings.

Based on the previous CMS guidance, states were permitted to “refuse to fund any residential setting for people with disabilities that is larger than three or four people.[i]” In an attempt to desegregate and end the isolation of adults with disabilities, the guidance also restricted the individual’s ability to choose.  While these regulations did help to defund historically segregating environments, such as institutions and residential schools, it also limited the ability of individuals with disabilities to choose to live in environments such as farmsteads, gated communities, and housing clusters. As written in Psychology Today,

“This [desegregation] is a crucial and uncontroversial goal. But where it got sticky was in the definition of these terms. Is 20 people with Autism living together “segregation” or “community”? And who decides? Largely due to the influence of a vocal minority of inclusion advocates, “institution” has been redefined as “more than four unrelated people.” In practice, this has come to mean evaluating policies solely in terms of how many neurotypical people any individual with I/DD lives and works with – whether or not that “inclusive” setting is desired or even appropriate.”

This new guidance has changed that. To begin, it affirms CMS’s commitment to person-centered planning, or, as defined by the PACER Institute, “an ongoing problem-solving process used to help people with disabilities plan for their future. In person centered planning, groups of people focus on an individual and that person’s vision of what they would like to do in the future.” It also focuses on the outcomes as defined by the person in their plan, rather than the characteristics of the physical setting. It removes the language that specifically restricts individuals with disabilities from living in gated communities, farmsteads, and other similar settings while receiving HDBS waivers. 

All in all, this is a positive step forward for individuals with disabilities that are looking for independent living options. There are many more changes that this new guidance brings about – including changes to the heightened scrutiny process – so if you are interested in learning more, follow this link to read the guidance in full.

It is important to note that states are still free to choose to adopt more restrictive criteria in regards to waivers and residential settings. Should that happen in your state, remember: the release of this new guidance is the result of tireless advocacy of disability organizations from across the country. Pay attention to what is happening in your state – contact policy makers, advocate, educate.

If you would like more information about HCBS waivers, independent living for individuals with disabilities, or would like to discuss independent living options for your family member with disabilities, please contact us! We would love to introduce you to our ILO network, and share with you the work we do to create communities for adults with disabilities.

Employment for individuals with disabilities is a very important issue. Studies have shown that employment can be vital to psychological health, as well as helping individuals socialize, integrate, and develop further skills. It is also true that for individuals with disabilities, employment is often necessary to achieve and maintain financial independence.

At M&L Special Needs Planning, we offer services that relate directly to employment. From the perspective of a financial and life planner, as well as a parent of an individual with disabilities, we are keenly aware of the employment barriers that exist for this population. We have experience in overcoming these barriers through our efforts as financial planners, parents, and advocates.

My Family Member with Disability Needs A Job

In a blog published on Integrated Living Opportunities (ILO) website, titled Exploring Supportive Employment: A Parent’s Perspective, Barbara Goldschmidt shared her experiences helping their daughter (an ILO self-advocate) search for and obtain employment in the Washington, D.C. area. She writes “National research reveals that 84% of people with developmental disabilities do not have a paid job. The 16% who do work put in 12-16 hours a week for which they earn about $85-$113.” According to statistics gathered by the Pacer Center, “individuals with disabilities are two and a half times more likely to be unemployed or underemployed than their non-disabled peers.” And, in the UCP’s Case for Inclusion 2019, it is written “Only seven states, down from 10 in 2016, report having at least 33% of individuals with I/DD working in competitive employment.”

The statistics are daunting. There are, however, ways to help your child with disabilities become one of the 16% that are employed. This process can begin as early as junior high/high school, when your child begins receiving transitioning services (through the Individualized Education Plan – IEP). The transition plan prepares individuals with disabilities for life after high school. Transition services help identify post-graduation goals, as well as highlight strengths, skills, and aptitudes of the student. The plan also identifies skills that need to be obtained or improved in order to meet those goals. Meeting with transition teams can be valuable ways to obtain information about government programs, training programs, employment supports & options, and to network with members of the disability community.

Another route to employment can be through Vocational Rehabilitation (VR). VR is a federally funded, state-administered program that provides any necessary support and training to ensure that individuals with disabilities are able to obtain and maintain meaningful employment. If an individual qualifies, the VR program offers assessment and counseling services, provides guidance for the Individualized Plan for Employment (IPE), and offers job-related and post-employment services.

M&L Can Help with the Employment Process

We specialize in helping individuals with disabilities plan for financially secure futures, while leading full and integrated lives. We are experts in helping families and individuals find a financial plan that maximizes all possible benefits while encouraging independent living and employment.

M&L founder and owner, Maedi Tanham Carney CFP®, is a Certified Work Incentive Coordinator (CWIC). In a nutshell, this means that Carney has been trained and can work in-depth with individuals who are working (or want to go to work), and have questions regarding their benefits and insurance eligibility.

So, how exactly can we help you? Carney uses her CWIC training and her knowledge of government benefits to provide work-incentive planning and assistance directly to individuals with disabilities.  She can perform outreach efforts to individuals with disabilities (and their families) who are potentially eligible to participate in Federal or State work incentives programs. CWICs also provide general information on the adequacy of health benefits coverage that may be offered by an employer of an individual with a disability, the extent to which other health benefits coverage may be available to that beneficiary in coordination with Medicare and/or Medicaid, and the availability of protection and advocacy services for beneficiaries with disabilities.

If you are interested in learning more about employment for individuals with disabilities, please contact us. More information on the topic can be found by visiting the Employment section of our blog archive.

Integrated Living Opportunities (ILO) is dedicated to helping self-advocates and their families build supportive communities for adults with disabilities. Our independent living model is sustained by our commitment to building community partnerships, helping self-advocates create personal and professional support networks, and by recruiting knowledgeable, experienced staff members to provide necessary services and supports.

Over the last month, we have published two blogs that highlight an ongoing issue in disability communities across the country: the shortage of available professionals in the direct support services fields. The quality of services received is crucial to the physical, mental and emotional health of individuals with disabilities. As pointed out in UCP’s Case for Inclusion 2019, “Direct Support Professionals are the backbone of community supports, but in general they are not staying in the field long enough to turn it into a career. Turnover is high and frequent, [and is] often highly disruptive to people with I/DD, a population for which stability is critical.”

Here at ILO, our staff members are important members of our community. Each position has been created with specific goals in mind, and together our employees work to ensure that every self-advocate has the tools needed to successfully transition to independent living and integrate into the communities of his or her choice.

ILO Staff

Once our participating families and self-advocates have completed ILO training and required assessments, ILO helps families find affordable staffing for the specific needs to the self-advocate. At this time, ILO does not provide the staff or the funding  of the staff position for the self-advocate. ILO does, however, recruit and train employees to work with self-advocates and families to ensure that they have the tools necessary to create communities according to ILO’s guiding principles, i.e. creating personal and professional networks of support, relationship building, and developing community partnerships.  ILO staff also facilitates recreation and social activities, and life skills classes for self-advocates.

Full Life Process™ Skills Inventory Staff

The Full-Life Process™ Skills Inventory is an extensive, integrated and interactive assessment of a self-advocate’s daily living skills. The Skills Inventory can be used to determine what the individual needs to do in order to be more self sufficient, whether it is learning or improving skills with money and budgeting, travel training, becoming more independent in the kitchen or learning how to be safe in their homes.

We have a number of Skills Inventory Administrators as well as a Master Consultant for Skills Inventory on staff at ILO. Our Master Consultant trains future Skills Inventory Administrators and completes the Skills inventories, as well as working to ensure that the Skills Inventory Tutors are compliant with the online assessment and goals as per the inventory.  The Skills Inventory Administrators works with the family and the self-advocate to complete the Skills Inventory. The Skills Tutor/Life Coach provides direct, one-on-one support and training to self-advocates so that they develop and improve their independent living skills through the use of the Full Life Process™.

Community Builders

ILO has two types of Community Builders: Residential and Non-Residential. Both types of community builders have very similar responsibilities – they facilitate the development of community among self-advocates in their pods, as well as in the local and wider communities. They help self-advocates create relationships with other members of their pod, develop problem solving skills, and plan social and recreational events (in a way that supports participants acting as stakeholders). They also work one-on-one or in small group settings to help self-advocates develop individual skills.

While the Residential Community Builder shares a lot of responsibility with the non-residential, this role is a little more involved.  Both types of Community Builders are responsible for regular check ins with their pod members. Residential Community Builders, however, work more closely with self-advocates, participating families, and the Executive Director to ensure that all self-advocates are setting and meeting goals, integrating into the community, working on independent living skills, and are leading full lives. The Residential Community Builder meets weekly with each self-advocate to identify goals and work on plans to ensure that they are met. They are also responsible to stay alert for issues relating to independent living, i.e. cleanliness, safety, etc. They act as a liaison between the self-advocate and other members of the community, i.e. landlords, other tenants, etc. 

Community Life Coordinator

The Community Life Coordinator is primarily in charge of ensuring consistency across all ILO community pods and among community builders, communicating progress and updates in all pods to the ILO Executive Director, and supervising ILO Community Builders and Life Coaches/Skills Tutors. The Community Life Coordinator collaborates with the Community Builders in the development of goals for each pod, as per the Full Life Model, establishes a calendar of activities/events for each pod, and provides guidance that ensures quality of activities in each pod, among other duties. 

At ILO, we are very proud of the roles that we have created to support our self-advocates and their families in their journey towards independent living, whether they are actively preparing to move into a home of their own, or are a part of ILO’s Community Group. If you are interested in learning about the individuals that we have recruited to fill these important roles, please take a moment to browse through the Our Staff page on our website. If you would like to learn more about ILO and how your family member with disabilities can become a part of our community, please contact us.

M&L Special Needs Planning, LLC is a company dedicated to helping families with special needs simplify their complicated and complex special needs journeys. As a financial planning company, we pride ourselves on offering services that help families plan for and secure financially stable futures for loved ones with disabilities. We also help families with the day-to-day planning that can ease financial burdens, help navigate government programs, and plan for the continued financial support of individuals with disabilities after their parents/caregivers are gone.

At M&L, we are both professionals and parents of individuals with disabilities. We feel that these two perspectives give us a unique insight to both the challenges that families face, and the ways in which planning can help individuals overcome these obstacles.

As such, we would like to take the opportunity to briefly discuss an issue that we have been watching worsen over the last few years – staffing shortages in the support services field.

Support Services Staff Shortage

Simply stated, the support services staff shortage in disability communities refers to the high turnover rates and lack of employees willing to work in the support services industry. This crisis is not hidden, nor unacknowledged.

In 2015 we published our first article on the subject, a two part series called Support Staff for Individuals with Disabilities: A Crisis, Part 1 and Part 2. This series explores an article written by Gail Frizzel, in which she discusses the trouble she faces securing a support worker for her daughter with disabilities (and the resulting threat to independent living), as well as the different suggestions and solutions for families experiencing these issues. Although four years old, the issues raised in the article are still relevant. As she wrote in 2015, 

“The system of government-funded supports and services that is designed to meet the needs of individuals with disabilities is facing many challenges. Individuals are presenting with a far wider variety of intellectual, physical, and behavioral challenges that ever before. They are living longer. And, they are claiming their right to make choices about where and how they will live their lives. But the greatest challenge to be overcome at this time, before any of the others can be addressed, is the increasing lack of a worker pool, adequate in capacity and skill, to provide the direct support that enable individuals to survive each day.”

In 2017, the President’s Committee for People with Intellectual Disabilities wrote a report to the President, titled, “America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the US Economy.” In this report, committee members discussed the crisis and explored the ways in which the economy affects and is affected by the shortage of these workers.

And just this year, the UCP’s annual Case for Inclusion report also raised concerns about the shortage, stating: “A significant addition to the 2019 report includes incredibly sobering data about the magnitude of the Direct Support Professional workforce crisis. The inclusion of this issue recognizes that in the absence of a stable, qualified direct support workforce, states will struggle to reduce waiting lists, and to support people to experience community integration – to be included, supported and empowered.”

All parties are in agreement – individuals with disabilities are entitled to live inclusive, integrated, independent lives that are connected to the community. They also all agree that in order for this to be possible, many individuals require the types of services provided by individuals that work in the support services field. This crisis needs to be resolved, and quickly, so that our family members and friends with disabilities can continue to live independent, full lives.

Support Services Shortage: Contributing Factors & Possible Solutions

The factors that are causing this nation-wide shortage are also widely known and discussed in the disability community. It is generally acknowledged that low wages and non- competitive aspects (i.e. no chance for advancement or performance-based incentives, etc.) result in high turnover and fewer numbers of individuals entering the workforce. Those factors, combined with longer life expectancies, higher levels of needs, and growth in the population of individuals with disabilities, means that there is now higher demand for a population of workers that is already experiencing a shortage.

The solution to the problem may seem simple – pay higher wages with competitive benefits and provide greater employee supports and benefits (i.e. health benefits, training, vacation, etc.) to help retain individuals already in the field, and recruit those entering the field. In its report, the Committee of for People with Disabilities fully explores possible solutions, and cited both of the above as recommendations that could help to resolve the crisis. The report also recommended exploring the use of technology to help ease the burden on workers (smart homes, video monitoring, etc.) and to “expand utilization of self direction in long term services” so that individuals could pull from their personal networks of support (friends, neighbours, etc.) to fill the role. To read the recommendations in full, please follow this link.

To Be Continued…

We encourage you to take a moment to browse through our blog archive on this subject, and take a moment to read our 2015, two-part series (referenced above). For more information, please do not hesitate to contact us. As well,  check back for our next blog (March 8), where we will discuss the non-profit Integrated Living Opportunities’ (ILO) community building model for independent living, and how this organization handles staffing and supports for its self-advocates.