State Developmental Disabilities Agencies and Service: A Starting Point
Find out what programs your state developmental disabilities department agency offers.
Autism Society of America has a very good, up to database of resources related to people with autism in every state.
It is our experience that state agencies are for the most part, underfunded and understaffed. This means that you will phone their central numbers and get answering machines in which you will have to leave messages. It is anybody's guess when or if you will receive a call back.
We suggest you go to your state’s developmental disabilities website and read all the information they offer on adult services.
In most instances you will find local or regional offices that offer coordination of adult services. Coordinators and case workers are more likely to return your call from the local office. In any instance, if you can find an email address of a coordinator or state employee you are trying to reach, always write an email stating the information you are seeking along with leaving a phone message.
Keep a record of the dates you made calls and sent emails. You may need this information later, since if you never get a call back you may need to ask for help from your political representative’s office. Hopefully it won’t come to that, but you would be amazed at how quickly an official from a state developmental disabilities department will return a call, when the request is made by a state politician’s office.
Once you do get a call back, there is such critical information you need. Many states at minimum have funding to provide day programs or employment programs that on average run from 9:00 to 3:00 Monday through Friday. Some states may also provide money or services to provide a number of individual support hours or staffing for late afternoon, early evening or perhaps some weekend support hours- each state differs in what they offer, so you need to find out exactly what they do offer or don’t offer for your particular one.
Some states have programs where money or services are available for what is referred to as residential placement. This means the state will pay for a person with autism to go into a group home (or other community living options); however, most states have very long waiting lists for such services, and very strict conditions in which your adult-child can qualify to get pushed higher up on that waiting list.
In Maryland, the Developmental Disabilities Administration offers an alternative to their traditional adults services (Community Pathways), which is person-centered and enables the DDA participant and their family to control services. Go to: http://www.dhmh.state.md.us/dda_md/Training/NDBasics908.pdf
The New Directions Waiver calls for every person to have a written Plan of Care utilizing a family or person-centered planning process. That means that the process in developing your plan, who helps develop the plan, and what it says in the plan are all directed by you and your family.
Family or person-centered planning is intended to identify your preferences, strengths, capacities, needs and desired outcomes or goals. The process includes participants freely chosen by you and your family, who are able to serve as important contributors to helping you achieve your plan. The family or person-centered planning process enables and assists you to access a personalized mix of paid and non-paid services and support for all of the identified personally-defined outcomes. It also helps you to decide upon the training, supports, therapies, treatments and/or other services you and your team determine are needed to help you achieve those outcomes.
Having a person-centered plan is the first step of self-directing services. It needs to describe the services and supports you will need to achieve your goals, i.e.: how often you will get each service, and the type of provider you would like to use to provide services. Your plan will also contain the individual training requirements for providers of service, and contain a plan for how potential emergency needs will be met.
Here are two examples of plans. (links to examples)
The following individuals are responsible for the preparation of the plans of care:
- Your Resource Coordinator (All individuals who are enrolled in the waiver will be assigned a Resource Coordinator as part of the intake process)
- You and your family,
- your Support Broker,
- and any other persons that you and your family choose to have involved.
Copies of your written plans of care will be maintained for a minimum period of 3 years in the following location(s):
- Resource Coordination/Case Management offices
- Developmental Disabilities Administration Regional Offices
- The plan of care will be subject to the approval of the Developmental Disabilities Administration and needs to be reviewed once every 12 months.
New Directions is a consumer-directed system rather than a traditional provider directed system. It is not designed to be an increase in services but rather an opportunity to explore a new way of supporting individuals with developmental disabilities and their families to have increased power and control over planning, budgeting, expending and managing service dollars.
-DD eligible, any age
-ICF/MR level of care
-Financial – 300% SSI
-Choose to live in your own home or your family home in the community
-Currently be in DDA services or have newly allocated DDA service dollars
Service Package includes:
- Supports Brokerage
- Fiscal Management Service
- Respite Care
- Supported Employment
- Employment Discovery and Customization
- Community Learning Services
- Community Supported Living Arrangement (CSLA) I and II
- CSLA Retainer Fees I and II
- Accessibility Adaptations
- Family & Individual Support Services
- Assistive Technology & Adaptive Equipment
- Live-In Caregiver Rent
- Transition Services – Residential Start-Up
Traditionally Implemented (not self-directed)
- Resource Coordination
- Day Habilitation - Traditional Day Services
- Behavioral Supports
- Medical Day Care
You may wish to find out if your state offers a person-centered alternative to their traditional adult services that would be similar to New Directions. This will give you much more control of the nature and quality of your services and also enables you to work with an established provider/vendor, but under this program, many of the features are negotiable, not dictated.
Call each provider agency and ask them to mail you material. Begin by collecting any descriptive writer material, or brochures, each provider has available. You need to establish your own checklist of features you are looking for and then determine if that particular provider offers that feature. Some questions to consider and ask about:
- How many consumers live in each residence?
- Does my loved one get their own bedroom?
- What residential options are available, i.e. houses, townhouses, apartments, duplexes, etc.
- What is the staff: consumer ratio? Is it one staff for 2 people, 3 people for four staffers? Staffing rations differ on weekends, over nights, or during the day.
- If my loved one is sick and cannot go to his day program- who is available to offer daytime support?
- Does the residential program have a structures schedule? If so, what does a daily schedule look like? Does it include rotating chores? Does it include social and recreational opportunities? If so, how often? Are daily meals and menus mandatory or are individual arrangements available for particular food tastes?
- Who provides medical and dental support services?
- If your loved one lives at the residential programs, is it mandatory for them to use that provider’s day, or vocational, services- or can you choose another provider?
- What day programs, vocational programs, does this provider offer?
- What are the details of the conditions, or rules in place that could result in my loved one getting kicked out of the program
- Will the program allow you to bring your own behavioral list or speech therapist or multi-disciplinary team to work with your loved one?
- Does this provider have particular expertise in providing support for people with autism, or do they primarily serve mixed developmental disability populations? Note: It may, or may not, be a desirable outcome to choose a provider with broad developmental disabilities experience- the primary issue is does the staff get good training on how to work specifically with people with autism.
- What is the organizations safety record and is that available to find out?
Once you have determined from written brochures that the provider meets your checklist, it is time to verify. You can, and should, be using these options:
- Meet with the provider face to face and ask the same questions.
- Visit a range of their residential settings and take a look for yourself if the homes are quality or not.
- Ask local and regional coordinators about the reputations of each place and tell them what you are looking for. Many will circle two or three residential providers on the list for you, helping you to narrow down the search.
- Use social networking to raise the question of how people will feel about each provider. This will bring up a range of issues, both positive and negative. Keep in mind that each comment is colored from that person’s experience- which may, or may not, be the same experience you will have. In general, if the majority responses are negative- pay attention to that.
Once you have chosen one or two residential providers you like, it is now a question of whether they have openings available now. If not, try to find out when they anticipate openings and if you can get your loved one’s name on the waitlist. From this point on, it is necessary to begin to develop a personal relationship with that provider, so when they have openings, they will remember you, prioritize your need, and hopefully, give that opening to you.
Most residential providers will say that they offer openings for residential services on a first-come first-serve basis. That is not always true for most providers. What is actually going on is that the placement director is looking for the best “fit” for the residence they have an opening for. Are they looking for a male or female? Do diagnostic criteria play a role? For example, (They already have residents with some behavioral issues so they are looking for a consumer who is higher functioning or better behaved.) Organizations that are looking for a good mix are doing the right thing. A good mix is critical. There are a few ways an organization can know if your loved one is a good mix for one or another of their residential sites.
- They know your loved one well because your loved one already participates in their day or vocational program. If you like a provider and hope to get into their residential program it is a good idea to get the consumer into their day program or vocational program. In this way, you can get to know the CEO and staff of that provider and they can get you know you over time. This is a valuable process because this instills confidence in the provider that they can handle the consumer’s behaviors. This also enables you as a parent to “keep tabs” as it were, on potential residential openings, and continue to press for openings, by keeping your need clearly and regularly in their minds.
- If you can not involve yourself directly in their day program over time, you need to organize a clear presentation of your loved one. Organize your records that give clear examples of behavioral issues and appropriate interventions that help reduce aggressive or self injurious, behaviors. Have good video tapes available of the consumer under a variety of conditions at work-play-at home- showing their highest level of functioning. Include reference letters by support aides, helping professionals, etc.
In either instance, if your loved one gets a placement, you have to be sure your state Developmental Disability agencies will pay for support. If so, you develop a transitional plan with the residential provider and gradually bring your loved one on- perhaps starting with weekend placement for a few weeks. Some will start placement from cold-turkey. You will need to understand how they deal with the actual placement.
Each state may have different regulations on this issue so you have to verity carefully, but some examples that will move someone up on the waiting list:
- The consumer is a danger to themselves or others and you can demonstrate that you have implemented necessary support and strategies to reduce these behaviors or aggression or self harm- and any efforts that have not been effective.
- Both parents are beyond the age of 70.
- Parents below the age of 70 can demonstrate they have serious health conditions that preclude them from offering the necessary support to continue to care for their adult child.
In conclusion, either your adult child lives in a state where funding for residential services is available, or you will be put on a waitlist-in which case, you need to meet conditions 1-3 in order to move up on that waitlist. However, once you qualify, you still have a long way to go, because you still have to find the right residential service provider who can offer your loved one the quality life you are hoping to find. In most cases, you will be handed a list of residential service providers and that begins another complicated process to navigate. You need to choose a residential service provider and find out if, and when, they have an opening and if they have specialized experience in supporting people with autism.