The Journey Towards Independence and Inclusion for People Living with Developmental and Intellectual Disabilities
a story from Renée Schumacher
“National Developmental Disabilities Awareness Month,” observed in March of every year, is a great time to reflect upon some of the most vulnerable in our community — those who are faced with impairments in physical, intellectual, learning, and/or behavioral functioning.
As the Vice President of Intellectual and Developmental Disabilities at Catholic Charities Family and Community Services, I witness first-hand the challenges that people living with both intellectual and developmental disabilities face and the limited amount of support resources available. If you or a loved one has been diagnosed with dual disabilities, here is what you should know.
1. Diagnosing Dual Disabilities
The first challenge is obtaining a diagnosis. Unless the provider is trained in diagnosing both populations, a proper diagnosis would require multiple providers. A mental health specialist would be needed to identify the mental health concern plus an additional provider to diagnose the developmental disability.
Once both providers are established, medical information that supports the dual diagnosis is necessary to obtain recommendations for support and services to help the individuals living with dual disabilities achieve independence and assimilation in the community are made.
There are some developmental disabilities such as Down syndrome that are present when a person is born, therefore, the diagnosis is available very early on. Others, such as autism, could take several years to diagnose.
When a mental health concern arises, an individual may suddenly not be able to do some of the things he/she was able to do previously. For example, it might be the onset of paranoia. Now, he/she can’t step outside to go to a program, because of a paranoia about going outside is present. It might be hearing a voice that says, “no, you can’t do that today.” Or a voice saying that “taking your prescribed medication is harmful.” The mental health symptom can have a significant impact on the developmental disability.
2. Accessing Support Services
The New York State Office for People With Developmental Disabilities (OPWDD) is responsible for coordinating services for New Yorkers with developmental disabilities, including intellectual disability, cerebral palsy, epilepsy, neurological impairment, and autism. It offers a strong working partnership with families and individuals and provides services directly and through a network of not-for-profit provider agencies.
In order to qualify for services, a developmentally delayed diagnosis has to take place before the individual turns 22 years of age. Any mental health disability can be diagnosed at any time.
OPWDD determines whether or not the developmental disability diagnosis meets the State’s eligibility requirements to receive supports and services. Once eligible, OPWDD’s “Front Door process” begins, an intake process is established, a case manager is assigned, and a person-centered Life Plan is created. Family members, outside community providers, and any other advocates are encouraged to be a part of the treatment planning process.
3. There is Hope: Setting Goals & Implementing Services
Now that the person’s goals have been established, the next step is to implement the services. Referrals to partnering agencies like Catholic Charities Family and Community Services with residential, vocational, and community support services are made. These services are designed to foster community, inclusion, and independence of people living with disabilities.
Certified residential housing is available in two types of supportive settings. Supervised 24-hour care where the staff assists people with all aspects of daily living skills, including: personal hygiene, healthcare, medication administration, nutrition, transportation, recreation activities. Supportive Residences offer intermittent staff support as assistance is needed
Non-certified housing provides needs-based supports and services to people living in their own homes or apartments or with family and is funded through a housing subsidy and/or community habilitation service which provides daily living skills and training to help keep these individuals living more independently.
“We recently welcomed brothers into one of our residential homes. Their caregiver had recently passed away and the boys hadn’t had any experience with day programs or a lot of time in the community. This transition to group living without family members was very new to them. They are roommates, so that they have the comfort of being together. We’re helping them learn the daily skills needed to navigate being in the community and they are looking forward to starting a day program very soon.”
Offers soft skill training, interview preparation, job placement and on-site job coaching for people with disabilities to successfully obtain competitive employment in the community.
“We have a young lady in her early twenties with autism living in one of our supportive apartments. She is currently working with her case manager to find employment at a local restaurant. Together, they are working on how to write a resume and fill out an application.”
Direct Support Professionals assist individuals in learning daily living activities ranging from laundry, grocery shopping, menu planning, and budgeting to learning to access the community resources in their neighborhoods.
“A client shared with us the other day that he wants to drive someday. So, we ordered a permit manual and discussed what is entailed in obtaining a driver’s license. He is motivated to do all the things he needs to do in order to get that license!”
Self-direction means that the individuals with disabilities, or their representatives, choose the supports and services that they feel work best for them. Self-direction promotes personal choice and control over the delivery of services, while managing a budget to fund the services. Self-directed services highlights people driving their own support and service-related decisions.
“One of our clients, age 37, has been with us since 2005 and has been living in a group home since 2009. Last week, she moved out of 24/7 care and into a supportive apartment. She is taking all of her medications on her own and contacts help as needed.”
4. If I had a magic wand: More Cross-Trained Providers, Please!
There is a growing need to advocate for more providers in our community that have that expertise in both the mental health population and the developmental disabilities population, because these experts understand the impact one disability has on the other.
In our community, there are a very limited amount of service providers who are fluent in serving both populations and who have the expertise on how mental health conditions impact developmental disabilities and vice versa. Too many individuals are being untreated or mismanaged due to the lack of professional resources.
Mental health organizations and healthcare providers are encouraged to take a close look at how they serve folks living with the dual diagnosis of a mental health condition as well as an intellectual or developmental disability. Anyone interested or qualified in this specialized line of work can inquire further and learn about agency partnership opportunities by reaching out the local OPWDD office.